Hello, I have just returned from my neurologist. He wants me to go to Cleveland Ohio to see a Doctor Tepper there. They are doing a procedure which is similar to the occipital nerve stimulator, only this would be a small stimulator placed directly on the trigeminal nerve in the face area, guided by MRI and I believe the patient tells where the best response comes from. He said they are having very good results with it. He just saw a patient who went from 7 HA's a day down to one a day in which he didn't even need to use imitrex for because it wasn't that severe. It is same day surgery, & only done at this place, from what he has said. I am going to start by speaking with a financial planner then take it from there. I'll post along as things happen. I don't have a name for the procedure or any other info yet, such as cost but I will get all the info I can & post it as soon as I know more.

Sounds like that little stimulator that's implanted in the upper jaw (incision is made inside the mouth behind the upper back teeth on the affected side), then activated with a wireless hand-held wand from the outside.

Oh wow, is that how they do it? My doctor showed me an area just next to my ear, on my cheek where it would go. Seems like it could cost anywhere from $30,000. to $46,000. but we'll see. No charity for me either, since I'm not a resident of Ohio. Someone will be calling me back by tuesday to get my payment for the consult & make an appt. I think the consult will be $900.00. So crazy expensive.

Yeah, it is.

Is this is it? Scroll down to page 18. Dr Tepper is the doctor I will be seeing. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I don't know why it won't attach the last letter "f" in that copied link. I've tried to do it twice.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Try this link (it doesn't have to be a secure, https link)

Looks like something similar. However, Dr. Goadsby spoke of it in Atlanta two years ago as being a wireless stimulator that was implanted via incision in the gum behind the upper wisdom tooth.

Ariel, that's an awful lot of money to put out on a surgery that may not help. Please consider very carefully all other alternatives you have heard about, but may have discarded for whatever reasons. I truly understand the desperation one can feel...I've been there, and not so long ago. Meds, med combos, doubled up and varied abortives, clusterbusters...run the gamut first. If you can find someone else to pay for this, that's a different ballgame, maybe...just concnerned for you because deep suffering can be a bad time to make lifelong decisions. God bless. lance

Thank you, lance. I know that it's a lot of money. Believe me, I think I was seeing that figure in my sleep last night. And it's scary putting that much down on something that may not work. I'm not treating it lightly. After so many years of dealing with this, I recognize when things are becoming unsustainable. Doubled up combo first & second & even third line prevents, unattainable imitrex shots (2 vials a day? Who can afford that?) and now even prednisone not helping. I actually live in terror of the day when I will have 3 HA's a day & nothing to stop the pain. I have to try it. Even if I lose my savings. Besides, maybe it will even work. Imagine that? I wish I could be part of a study, but the ganglion cascade 12 years ago prevents me from being included in all studies. Not sure why, maybe it interfere's with their results?   I think that's a little unfair since most sufferers have tried various minor invasive procedures before. Well, I guess we'll see when I meet with this Doctor. I am still hoping they can help with the financial end of it. 

Can I make a suggestion? Before you commit to losing your life savings on something that has a 50% chance of providing sustainable relief, go over to the clusterbusters message board, sign on, and start reading.

For a fraction of the cost (and I mean a teeny, tiny fraction of what you're looking at with this surgery), you can at least try a method that promises relief to 75-80% of those who try it.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Clusterbusters saved my life. And I do not say this lightly. Sufferer of over 20 years, 4 of which have been chronic and intractable. Minus the recent relapse I've suffered (which compared to the previous 20+ years has been actually somewhat tolerable), the last two years of my life have been PAIN FREE. And that happened after busting regularly (every 5-7 days) for a couple of months, then doing a maintenance dose every 4-6 months.

Thank you Brew, I will look again at it. I am worried that they may not do the surgery if that is in my system. But, I will devote some time later today to reading up on it some more. I'm so glad it has helped you. It is good to know there is one more option as well  :)

"It" doesn't stay in your system more than a couple of days. And I know of no routine test for it. Even with major employers, standard screenings only look for the big hitter substances.

Oh, that is really good to know! I watched the nat geo youtube clip, and I was very interested in learning more. But then things just got so intense, very quickly. 

Quote:

Ariel, that's an awful lot of money to put out on a surgery that may not help. Please consider very carefully all other alternatives you have heard about, but may have discarded for whatever reasons. I truly understand the desperation one can feel...I've been there, and not so long ago. Meds, med combos, doubled up and varied abortives, clusterbusters...run the gamut first. If you can find someone else to pay for this, that's a different ballgame, maybe...just concnerned for you because deep suffering can be a bad time to make lifelong decisions. God bless. lance

I could not totally, and most strongly agree with Lance more.  Look closely around the cluster-buster site that Bill gave you the link to.  There have been so many who have had their life back with the use of this alternative. 

I cannot even imagine paying 900.00 for just a consultation, much less the exorbitant cost of the surgery. 

Linda

My advice is to try alternative's first and use surgical procedure as a last ditch choice. For me any surgical procedure has to have over 97% chance of success to be worth it.
Have you seen the stuff about using D3, magnesium and zinc. It is on the thread directly below yours.
Wish you well.

Brew wrote on Apr 6^th, 2012 at 10:28am:

Can I make a suggestion? Before you commit to losing your life savings on something that has a 50% chance of providing sustainable relief, go over to the clusterbusters message board, sign on, and start reading. For a fraction of the cost (and I mean a teeny, tiny fraction of what you're looking at with this surgery), you can at least try a method that promises relief to 75-80% of those who try it. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Clusterbusters saved my life. And I do not say this lightly. Sufferer of over 20 years, 4 of which have been chronic and intractable. Minus the recent relapse I've suffered (which compared to the previous 20+ years has been actually somewhat tolerable), the last two years of my life have been PAIN FREE. And that happened after busting regularly (every 5-7 days) for a couple of months, then doing a maintenance dose every 4-6 months.

  What he said.  I'm pushing ten years PF.

              Potter.

Cost aside even.  I don't know about a surgery like that.  Sounds scary.  I know we get desperate and all, but damn! 

I wouldn't discard Brew's advice. Cluster 'busting' has been very effective for many. I Just watched another story about it on NATGEO.

I just returned from the Cleveland Clinic. There are 2 "Dr. Tepper's" there. My appointment was with Dr. Deberah (sp) Tepper, which (incoviently) relocated her office from the clinic to a hospital. I had to see a different doctor once there. (actually 2 neuro's came in to meet me) I was referred there for a "Deep Brain Stimulator" so I have another appointment with a neurosurgeon in late May. (right now the DBS is OFF the table IMO because my attacks are down in frequency and intensity due to Histamine Desensitization Therapy. (No major attacks at this time)

After seeing the neuro's and going thru all my past meds and treatments, they recommended .... KUDZU root. WOW! I was shocked to hear them say that. According to them, Cluster specific trials with KUDZU was very positive 'especially among chronics'.

Plz consider the alternatives before surgery (Both "Busting" and Brew's '123 days pain free' thread) and goodluck to you.

I4B

PS> to BREW: I'm getting ready to get the needed stuff to give your regimen a real try. I'll post and update later ... and thanks again.  :)

That's Batch's Regimen, not mine.

My appt will be with the male Doc Tepper. They want their money first (consult fee) & even then she said his next appt is end of July, but I'm hoping a doctor to doctor call will get me in sooner since my doctor already spoke with them. I've never heard of the histamine therapy, but it's amazing that it is helping you & I hope it continues to do so. I'm going to ask about that. When they recommended you try the Kudzo, did they give you all the info you needed & where to get it & how to use it, or did they tell you to go about it your own way? I'm so surprised they told you that, too. I have been on the d3 & other supplement regimen for almost 2 weeks now, and that I will continue. I think the deep brain stimulator sounds scarier. But, If it was offered to me & I didn't have to pay, I would jump on it, so I understand how you were ready to do it. Thank you everyone for your replies. I will be reading up more tonight. And I'm not just saying that. I really will. For now I'm tapering down my prednisone as quick as possible & then going to do another big hit, starting at 80mg this time. Something has got to give right now. I'm slowly losing the will to live. I'm so glad I found this place though. I wish so much we didn't have to, but it is comforting to know there are other people who understand this level of pain & not to be looked at as a complainer or weak, or asked why I can't just "take some tylenol & get on with it."   :'(

Ariel,

I'll look up the information I have about the Kudzu, but I know you want to look for Planetary Herbals (previously Planetary Formulas). That's the brand to get, and can be found on Amazon. As for the dose, that's what I can't remember... but I'll look. I think other brands may work, but in the best study I've read on Kudzu's effectiveness for CH, Planetary Herbals (/"Formulas" in the study) was the most effective brand for whatever reason.

Thanks Brew for pointing out that it is Batch's regimen. I gotta give credit were credit is due. Thanks Batch ! :)

As far as asking about Histamine Desensitization therapy, the Cleveland Clinic doesn't do it. You'll probably only find a couple hospitals in the USA that would do it. I only know of 2 places to get it done at. The Diamond Clinic and Floyd Memorial Hospital in So. IN.

An Occipital Nerve Stimulator has leads attached to the back of the neck / base of the skull area. What your talking about sounds like a Trigiminal Nerve Stimulator implanted inside the mouth. It requires 4 incisions (inside the mouth [a device about the size of a walnut], [electrical leads] near the temple and another higher, and on the chest [for the battery]). It's not a super invasive surgery (less than a DBS) but it is more invasive than the ONS.

I4B

I'll meet the neurosurgeon that does all these stims for the Cleveland Clinic on May 22.

Ariel,

If you're interested in adding Kudzu, you want to get Planetary Herbals kudzu and take 1500mg three times a day. That seemed to have the best chance of helping as shown in a paper done by Dr. Andrew Sewell.

@I4B, who will you be meeting at Cleveland? Do you know? They have given me an appt for april 25th with Dr. Michael Stanton Hicks, but I don't think he is a neurosurgeon, so I'm a little unsure about it. But that is who my neuro wanted me to see. I will be travelling far & I hope I am being sent to the right person. Esp since I am paying for all of this out of pocket.

@zacsz, thankyou for the info on the kudzu, I am going to get it right away. I'm willing to try everything.

@Ariel, no problem. Also, Dr. Stanton Hicks is not a neurosurgeon, but he is a Pain Anesthesiologist. He's the one who performed my SPG block so don't worry... he knows what he's doing!

Its good to hear that he knows what he is doing, its just that I was going all the way to Cleveland to inquire about the nerve stimulators, not a block. I had a block done by a neurosurgeon 12 years ago in which they injected glycerol into the ganglion of my trigeminal nerve, and it didn't work at all. I was sedated & when I woke I had to be sitting up with my head taped to the bed in the recovery room for 5 hours & I kept getting HA's (my then husband kept sneaking me shots of imitrex). In fact, I had more HA's than ever after that procedure. So, now I'm not sure why my doc is sending me to him.

Right, right, I guess I didn't fully explain myself. Certainly my procedure and yours are very different. I could be wrong, but my point was that while he's obviously not a neurosurgeon, I get the feeling Stuart Tepper works in tandem with him all the time... Stanton Hicks is definitely Tepper's preferred guy for almost all of these procedures, and there must be a reason. I don't really know what pain anesthesiologists are trained in (I mean, the very specifics... I can gather that they anesthetize pain!), but I doubt you and I are the first two people Tepper has sent to him, and I get the impression he is well-versed in all of these things. Of course, it's not like the guy is my best bud and it's all purely conjecture but I'd just try not to worry too much about the fact he isn't a neurosurgeon if I were you.

In fact, here's a quote from his bio (on the CC page) in case you haven't seen it that might put you at ease: "Dr. Stanton-Hicks has been the principal investigator for numerous funded research projects. His primary areas of research are the movement disorder of complex regional pain syndrome (also known as reflex sympathetic dystrophy), pharmacologic aspects of pain management and the use of neurostimulation in pain medicine." Based on that fact and the fact that Tepper has such an affinity for him, I just don't think you have too much to worry about. Which I know is much easier said than done, believe me, but this seems to be a specialty of his.

Thank you for that! I do feel a bit better about it now. I will be seeing him on the 25th & I really can't wait to see what he says. Its good to know that the stimulators are part of his research.

My question is:  Since you haven't really worked at trying the abortives (Oxygen) nor some of the more off-beat busters Why would you consider this unproven surgery?

        Potter

Well, I know the oxygen works for many people, but it doesn't work for me. I have tried it quite a few times, most recently at the HA specialists office, set as high as it would go with the right mask. Also at a clinic, in the hospital while pregnant & at home. They also gave me an occipital nerve block at the same time & that didn't work either. I'm on prednisone, verapamil & depakote & still getting a lot of hits. I can't really do the busting, I am a single mother of an autistic boy and I just need to always have my facilities in order, so to speak. If I had someone to help me at home, I would consider it. And even now, I haven't completely ruled it out, if after this I am still as bad as I am. Sort of my last resort, though. I have tried all the other prevents as well, lithium, neurontin, norvasc, topamax, ritilin, methadone, various anti depressants, indomethacin, solumedrol treatments, nerve blocks all over trigger points on my head, daily triptan doses as a prevent, and many more meds that I can't even think of right now. The energy drinks didn't help either. I just need to do something. If I was getting relief from the steroids, I would just stay on a lowered dose, but for some reason it's just not working. Even my HA specialist has agreed that I need something more. I don't know, maybe it's wrong. Maybe I am being incredibly stupid in tossing so much money at something that may not work. Even some in my family think that. But I just want a chance at a normal life. You know, as much pain as I am in each day, and I know all of you will understand this, I would even be willing to live with it if there was some way to make sure I always had imitrex. But who would ever give me 2 or 3 vials a day? And how fast would I be bankrupt if I had to lay that kind of money out indefinitely? My biggest fear is not having that imitrex. Its such a terrifying thought to me, knowing that in my future could be days of 4 attacks each day & no imitrex. I would rather not live at all than suffer like that. Well, anyway, that's the best I can explain, I guess.         

The pharmacutical company will give you up to 12mg of Imitrex per day with the patient assistance program provided that your doctor or neuro fills out the paperwork AND that you at least attempt filing for disability (weather you get it or not). Your doctor along with the pharmacutical company CAN help you get those at NO COST.

I hear that some "Pain docs" are doing some stims, but I don't see them doing any major stims.

I am meeting with Dr. Andre G Machado on May 22nd. I was told by neuros at the Cleveland clinic that he is the main guy for the stimulators and a neurosurgeon. <?>


wrote on Apr 12^th, 2012 at 5:54pm:

Ariel, If you're interested in adding Kudzu, you want to get Planetary Herbals kudzu and take 1500mg three times a day. That seemed to have the best chance of helping as shown in a paper done by Dr. Andrew Sewell.

Is this Dr. Andrew Sewell from the University of Louisville Neurology Department ??  :-X

I4B

I hope it goes well for you in May. I tried calling Glaxo about the patient assistance program & they told me that they are no longer doing it for the injections. I couldn't find any other rx programs that were. Is it a different pharmacutical program?

Mine was thru Glaxco many years ago. I didn't know they stopped that program and think that's BS! Each state also has a patient assistance program called "SHIP" (I believe that's the name. Again, many years ago) that may get needed meds for you for free.

Sorry Glaxco won't do it anymore. Maybe the makers of the generic form (Sumatriptan) could help ??

Good Luck !

I4B

I actually called glaxo back & they said they do it for the nasal spray. They will pay for 8 per month, but they also said you could mix it, so I will try for 8 of the 20mg & 8 of the 5mg spray bottles. I figured it would be better than nothing. Also, I called sandoz & novartis labs, they aren't offering any injectibles for their generic sumatriptan. But thank you, because it was after reading your post that made me decide to try again with glaxo. The first time I called them, they didn't even tell me about the nasal spray. At least, I don't think they did.

Sorry, I made a mistake, they will allow 6 per month, of each strength. So, 6 20mg & 6 5mg sprayers, not 8.

Sorry, they gave me 60 (6mg)injectables /month at one time a long time ago. Good Luck :)

I4B

As if things couldn't get any worse. For some reason, half a shot of the new generic sumatriptan vials won't kill off a HA for me. I've used half a shot about 5 times now, and I end up taking the 2nd half within 10 minutes because it does nothing at all. I even had to take a 3rd half shot on one really stubborn one. This never happened with the brand imitrex. I don't understand, because I thought it was the same exact thing? It says sumatriptan right there on the label. Having to use full shots is going to kill me financially if they can't help me in Cleveland. Anyway my flight is today & my appt tomorrow. I really hope someone helps me. My life is pretty awful atm.  :'(

ariel wrote on Apr 24^th, 2012 at 2:41am:

As if things couldn't get any worse. For some reason, half a shot of the new generic sumatriptan vials won't kill off a HA for me. I've used half a shot about 5 times now, and I end up taking the 2nd half within 10 minutes because it does nothing at all. I even had to take a 3rd half shot on one really stubborn one. This never happened with the brand imitrex. I don't understand, because I thought it was the same exact thing? It says sumatriptan right there on the label. Having to use full shots is going to kill me financially if they can't help me in Cleveland. Anyway my flight is today & my appt tomorrow. I really hope someone helps me. My life is pretty awful atm.  :'(

i have had that on a few occasions with the generic as-well...what i have noticed,with the brand...it will abort on average appr.5-minutes...with the generic...15-20 minutes (if it does not kick in at the 20-minute mark,then i do another)...sorry that you are experiencing this.....Lenny

Keep in mind the dosage limits per an hour & per a day. Taking too much can cause serious and even deadly side effects. Be careful  :)

I4B

Imitrex4Breakfast wrote on Apr 6^th, 2012 at 4:52pm:

I wouldn't discard Brew's advice. Cluster 'busting' has been very effective for many. I Just watched another story about it on NATGEO. I just returned from the Cleveland Clinic. There are 2 "Dr. Tepper's" there. My appointment was with Dr. Deberah (sp) Tepper, which (incoviently) relocated her office from the clinic to a hospital. I had to see a different doctor once there. (actually 2 neuro's came in to meet me) I was referred there for a "Deep Brain Stimulator" so I have another appointment with a neurosurgeon in late May. (right now the DBS is OFF the table IMO because my attacks are down in frequency and intensity due to Histamine Desensitization Therapy. (No major attacks at this time) After seeing the neuro's and going thru all my past meds and treatments, they recommended .... KUDZU root. WOW! I was shocked to hear them say that. According to them, Cluster specific trials with KUDZU was very positive 'especially among chronics'. Plz consider the alternatives before surgery (Both "Busting" and Brew's '123 days pain free' thread) and goodluck to you. I4B PS> to BREW: I'm getting ready to get the needed stuff to give your regimen a real try. I'll post and update later ... and thanks again.  :)

Sorry to get back to this, but did they provide the warning not to combine the use of Kudzu Root and any of the triptans? When I first joined the board, cluster sufferers were experimenting with Kudzu Root. But the thinking at the time was not to combine it with use of any triptans, because you may run the risk of serotonin syndrome. Not sure what further work in the area indicates, but as both you and Ariel appear to be using sumatriptan, thought I ought to mention it.

Thank you for letting us know that  :)

Hi Ariel,

have you read Batch's thread 123 days and still counting? That is something to think about before surgery, if you have not read and tried it already. I've seen others mentioning it as well, but I'm not sure if you have tried it. :)

I read the long list of things you have tried in the past. I did not see two other things there as well, and do correct me, if I've mistaken: energy drinks and water treatment. Once you're off your current meds, do think about energy drinks, water treatment and Batch's advices before you try that surgery. I bet all of them will cost you a lot less than that consult alone.

Naturally, we're all different, and I'm so sorry that your ch is a persistent one. I do hope that you will find something that will truly help you reach PF time as soon as possible. :)

PF days,
Sanna

Hello, thank you for your well wishes. I have been on Batch's d3 regimine since the last week of March. I've also tried the energy drinks and it didn't really make a difference with HA. I wish so much that it did. I've tried the single shot one's with extra taurine & caffeine & also Monster.

Ariel,

Hang in there...  The anti-inflammatory regimen really works and the efficacy is much higher than the original 70%... 

Please try to get the lab test for 25(OH)D.  It will give you a good reference point.  Response times can vary from 12 hours to 45 days depending on your initial 25(OH)D level.  Most Ch'ers have responded with 25(OH)D levels between 60 and 110 ng/mL.

Take care and please keep us posted.

V.R, Batch

Batch wrote on Apr 29^th, 2012 at 2:58am:

Hang in there...  The anti-inflammatory regimen really works and the efficacy is much higher than the original 70%...

I agree, it's worth sticking it out in the hopes that it might end up working.  I also think it's worth pointing out though, that even if that efficiency moves up to 80% or even 90%--that still leaves 10%-20% that it's not working for....

Is their anybody that you know and trust to babysit your son?  Even if it costs a lot, if you could get a day or 2 off and try the clusterbuster method at least you would know if it does anything for you.   The LSA containing seeds will not really intoxicate you much, most people just report a really good nights sleep.  (and absolutely no way of drug testing you)

On the imitrex issue--Many many people have confirmed what the drug companies try not to tell you--generic drugs are NOT the same as brand name drugs.  I remember when I was having seizures and on Dilantin.  Docs made sure I knew that I could not switch to the generic version or it would be very close to me going off my usual meds--they are close but not the same.  Another doc confirmed this with me, saying that he see's the biggest difference in thyroid meds.  I know I have seen a huge difference for me in the generic vs brand name sumatriptan too.

And thinking about Sumatriptan--Many people have thought that the imitrex may be giving them rebounds and/or changing their headaches in a not so great way.  It sounds like you are taking a lot of it...Have any docs considered the idea of Imitrex rebounds?  The only way I was able to get off  so much Imitrex was by starting intranasal ketamine--and I have noticed a huge difference.  It's always possible that the Ketamine is having a preventative effect (but I doubt it) or that all the sumatriptan was interfering with my clusterbusting effectiveness...but if I had to guess I really think a good bit of it was just plain old Sumatriptan rebounds.

-Ricardo

hello, thank you for your reply. I am going to continue with it in the hope it will work. In the meantime, I have a scheduled spg block for may 24th. The surgeon in NYC has said he isn't too sure if it will help, since it seems to be more effective for people whose pain is mostly around the eye and above, but he won't do anything more invasive unless I try that first. He did say that it may help if my head pain part is a trigger point. I'm going to be in an OR and under anesthesia when it is done. Basically the same thing they said in Ohio. The Dr in Ohio seemed more optimistic, though. I'm going to do it because he is giving me a big break on the fee & because I am desperate. Plus it is temporary, so no harm really done I suppose if it doesn't work (except the chance of waking up with a severe HA). If it does work, they can do something more permanent. If it does'nt, then I think I will look into the other route if I can find someone to take care of my son for the weekend. I do agree that the imitrex may be causing rebounds. Its a tough situation to be in when you just don't have many options. I have found that the generic is working, it just takes 15 or 20 minutes. I have been trying to stick it out with just half the shot, but jeesh its so hard not to take more after 10 minutes, because I worry that it won't work after 10, then I will have another 20 mins to endure. The only good thing I really can say is my pain has gone down from a 10 with each attack to about a 7. A few days ago, out of desperation, I started taking OTC zyrtec, a once daily antihistamine. Only because I read smth about histamine somewhere & I figured it can't hurt. I don't know if that has anything to do with it or if the high dose of prednisone is helping with the intensity. Its most likely the prednisone, I would guess. But I can't be 100% sure unless I stop the zyrtec, and I'm a little scared to do that just yet. I'm sure all of you will understand that. I will soon, just not yet.   

Good luck.

ariel wrote on May 1^st, 2012 at 6:31am:

hello, thank you for your reply. I am going to continue with it in the hope it will work. In the meantime, I have a scheduled spg block for may 24th. The surgeon in NYC has said he isn't too sure if it will help, since it seems to be more effective for people whose pain is mostly around the eye and above, but he won't do anything more invasive unless I try that first. He did say that it may help if my head pain part is a trigger point. I'm going to be in an OR and under anesthesia when it is done. Basically the same thing they said in Ohio. The Dr in Ohio seemed more optimistic, though. I'm going to do it because he is giving me a big break on the fee & because I am desperate. Plus it is temporary, so no harm really done I suppose if it doesn't work (except the chance of waking up with a severe HA). If it does work, they can do something more permanent. If it does'nt, then I think I will look into the other route if I can find someone to take care of my son for the weekend. I do agree that the imitrex may be causing rebounds. Its a tough situation to be in when you just don't have many options. I have found that the generic is working, it just takes 15 or 20 minutes. I have been trying to stick it out with just half the shot, but jeesh its so hard not to take more after 10 minutes, because I worry that it won't work after 10, then I will have another 20 mins to endure. The only good thing I really can say is my pain has gone down from a 10 with each attack to about a 7. A few days ago, out of desperation, I started taking OTC zyrtec, a once daily antihistamine. Only because I read smth about histamine somewhere & I figured it can't hurt. I don't know if that has anything to do with it or if the high dose of prednisone is helping with the intensity. Its most likely the prednisone, I would guess. But I can't be 100% sure unless I stop the zyrtec, and I'm a little scared to do that just yet. I'm sure all of you will understand that. I will soon, just not yet.

I don't understand anything you've posted.

         Potter

My take on this is your desparate and in pain.. your are throwing too many things at this all at once..perhaps I am wrong but think about detoxing from some of these things and start with the most effective least invasive abortives and prevents...My expeirence is 02...doctors office only has 15 lpm..I use 40 lpm with an optimask. Prevents alternative and herbal are less invasive pharmacuticals. One thing at a time, do it well then move along. Doctors are practicing medicine when it comes to CH..There is no known cause,etiology, or cure....remember that. Just ask the doc. If your mixing pharmacuticals and herbals or altenatives they wont work. I see reasoning that paints yourself in the corner. I have done that myself. It is unreasonable to go to surgury without exhausting every other avenue of relief. Its your decision not the doctors. The best to you whatever you choose. I will pray for relief.
tachead

Quote:

Sorry to get back to this, but did they provide the warning not to combine the use of Kudzu Root and any of the triptans? When I first joined the board, cluster sufferers were experimenting with Kudzu Root. But the thinking at the time was not to combine it with use of any triptans, because you may run the risk of serotonin syndrome. Not sure what further work in the area indicates, but as both you and Ariel appear to be using sumatriptan, thought I ought to mention it.

No, they did not mention this at all and they know I use BOTH Imitrex (at times) and DHE (almost daily). I also believe that Serotonin Syndrome is real, but harder to get for some people than others (depending on body chemistry and other factors) simply because I've used 10 Imitrex injections per a day before and the meds only helped (except for my raising my BP).
Thanks for this info though and I WILL definately ask them about this.

I4B

Thank you, tachead. I know what you are trying to say about throwing too many things at this at once, but really, I gave the verapamil a good 2 months, at least, to work & it didn't. Then we added depakote & prednisone. Nothing worked. I have since come off the verapamil & depakote & am only taking prednisone now. I just didn't want to continue with meds that weren't working. Also, I did stop the zyrtec 2 days ago. It was still the same. I know how important it is to give each medicine a chance, especially as it could end up being something that works & if I was adding everything at once I wouldn't know which one was the effective one. This spg block isn't a major surgery & it isn't permanent so I will give it a try. My neuro has said that the spg can be a pathway to all the pain, and the block can interrupt the pain signals to other areas. I've been dealing with these headaches for almost 20 years, and I am ready to get more aggressive, though. Especially since the prednisone isn't as helpful as it used to be.   

Thankyou Brew for your well wishes.

I will come back & make a post about it after it is done & tell everyone exactly how it was done & how I feel afterwards just in case anyone is interested in looking into it for themselves.   

Sending all my pain free vibes your way Ariel, wishing you peace and some pain free time...and SOON.  :)

Joe

Thank you Joe. Pf days to you too  :)

I saw Stu Tepper at NECH when Dr Sheftell (RIP) was out on medical leave.
I didnt like the dude and he unlike Sheftell was pushing surgical procedures.

I wond up seeing Noah Rosen who had me do a DHE infusion for a week as an inpatient.

I'd do that and bust prior to surgery.

8 yr chronic

Good luck!