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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> The road to the cure!!!!!
        
(Message started by: zuesthedog on Mar 8th, 2006, 6:36pm)
Title: The road to the cure!!!!!
Post by zuesthedog on Mar 8th, 2006, 6:36pm
hello. myname is john I am a 41 year old male,who has suffered whit CH. since I was 13. It was misdiagnose as jaw alingment problem, teeth grinding, deviated sinuses,and finally as part of my imaginenation.Finally when I was 31 a med student walked into my bussiness,while I was under attack from the deamon.He told me to go see a Dr. Martin,who was a headache specialist.At this first appt.he read to me from a medical book all of the syp.I been living with for 6 week periods twice a year.Most of you are famillar wirth this insanity. The tearing of the eye, the running nose, oh yea and the pain. We can,t forget the pain.Anyway he started me on> predisone, then verap.,lith.,depakote,sanaert, topamax,imitrex,.The imitrex would help ,but I needed more than they will let you take> Then came DHE which made me feel like I was having A stroke.  ver the next few yars periods of remisson became less and less.Finally he declared me chronic.I guess 3 trips aweek to the ER. for over 2 years earsn you that title.Well time goes on with no help insite, Besides seeing the Dr. I tried ommish man who reads eyes>, Apain management Dr. who tried nerve blocks,and a phsy Dr. who tried two teach me how to relax.At age 39 I heard of a Dr. Dodick at the mayo clinic doing astudy involving ocipital nerve implants. I got on the list but redtape kept delaying it.. Finally I found Dr. Manyburg of the Mayfield spine inst.at University hosp. of Cincinnati.He agreed to to ocipital nerve stimp. in. nce I had The medtronic device implanted. I started getting some relief. Not completely,but better than i,ve known for years. After a year the stimp. started to migrate and eventually poke out of the back of my head.They had no choice but to take it out> The headaches return full force. This point my head Dr. was pushing for the gamma knife> Again I approach Dr. manyburg to have this vproceure done , he suggested we try a nerve stimp. on the trigenial nerve instead of burning it. This priocedure was done as outpatient,and is reversible. Best of all you control the freq. and amp
.,and the on and off time. Well its been about 6 weeks of pain free life.The small scar has heal, you can,t even tell i have it unless I turn it on.,{ eyebrows rise  by thier sef.] [the feliing is like when your foot falls asleep.] You get use to it. anyone who is considering gamma . should consinder this as a viable alternative. No side affects and is reversible.  I hope this can help one person from living the hell I have been throug.                                                                                               Dont give up Dont give in                                                                                                   PF days to all John. [smiley=huh.gif]
Title: Re: Cure for unbearale disease
Post by carriefu on Mar 8th, 2006, 7:11pm
Cure???says who??
Title: Re: Cure for unbearale disease
Post by nani on Mar 8th, 2006, 7:18pm
Where did you have it done? Who was the doctor that did the surgery?
Is your diagnosis strictly CH, or is there a co-existing condition?
Title: Re: Cure for unbearale disease
Post by Lizzie2 on Mar 8th, 2006, 8:13pm
Good for you!!  I'm glad you've found something that helped you.  :)  Have a few questions out of curiosity!!  (bear with me!)

What side are your CH's on?

Was the occipital stimulator placed on just one side or bilateral?

When you started getting hit again after the ONSI, was it on your usual cluster side or the opposite side?

What side was your trigeminal nerve stimulator placed?

Permanent or temporary?  Is it still made by medtronic?

Where exactly are the stimulator probes placed - ie. what branch of the trigeminal nerve - is it in your forehead, cheek, jaw?

Does the wire run down your neck to the battery pack and stim control placed still in the abdominal or back area?

What's the scar like - how big, where is it, do they think it'll heal?

Sorry for all the questions, but I have quite a bit of knowledge stored up about the ONSI and had had a very lengthy discussion with a neurosurgeon about the ONSI last year, but he didn't think it would work for me, so we opted not to do it.

Once again, very glad you are pain free!!  Hope it lasts for good.  :)

Carrie :)
Title: Re: Cure for unbearale disease
Post by zuesthedog on Mar 8th, 2006, 8:28pm
Questions are more than welcome. My pain has always been left side. the ocip. ,and trig. implants was and is on left side, yes its made by medtronic. i have quite afew wrinkles on forhead Dr. made a very small incision in one of the wrinkles you cant even see the scar,but if you look close you can see the wire but only about a half of inch then it goes under the hair. They made a larger incision on top of heas to tunnel the wire. The wire runs over my head and down the back of neck,then crosses to frt,and down to my chest to the batt-reciever. The batt was install when the ocip. stim. was placed.The Dr. used the same batt for the trig. stim. I think I covered all your qestions ,if you have any more feel free to ask. I also have avail phone numbert if you wish to talk about this
Title: Re: Cure for unbearale disease
Post by CHTom on Mar 8th, 2006, 8:48pm
Was the implant device the Medtronic Soletra 7426?  That is the device that I have implanted on my hypothalamus in September 2005.  We still haven't found the correct voltage to significantly reduce the attacks-up to 4.5v now.  What voltage are you getting?
Title: Re: Cure for unbearale disease
Post by zuesthedog on Mar 8th, 2006, 9:08pm
Iam not sure of the exact model num.,but the remote say Itrel EZ. the voltage and freq does not have ratings. I just started at the lowest and worked my way up till i found what seems to work. At first i was using it to abort attacks, but now I run it about a hour a day when i get home from work.I,ve been pf for about 5 weeks so it seems to work.Another thin this stim. is placed above my eyebrow,and hooked to the nervebetween temple area and eyebrow.
Title: Re: Cure for unbearale disease
Post by CHTom on Mar 8th, 2006, 9:14pm
You had a different operation than I did.  Mine is not a trigeminal nerve stimulator but rather sends current to the hypothalamus and the voltage must be increased by a physician.  Good luck with yours.
Title: Re: Cure for unbearale disease
Post by zuesthedog on Mar 8th, 2006, 9:28pm
Thanks .I have to get to sleep [god it feels good to say that with out fear].I ve got to be at work early. i also have a Dr. app. tomorrow,to update my headache specialist.DR Martin whos been a saint and guided me to the neuro that would do this surgery.I will be back tomorrow to answere any more questions. I hope I can help anyone find some peace, this type stim. is deffinatiely worth checking out. Just remember dont give up and dont give in. Hope you all sleep in peace
Title: Re: Cure for unbearale disease
Post by sandie99 on Mar 9th, 2006, 3:10am
I hope that you'll be PF in the future, too! :)

Best wishes,
Sanna
Title: Re: Cure for unbearale disease
Post by Beastfodder on Mar 9th, 2006, 8:37pm

on 03/08/06 at 18:36:46, zuesthedog wrote:
Have had trigenial nerve stimulator implanted feb 2.I believe iam the first to do this. will share all details


Sorry couldn't resist a couple of questions -

Couldn't you have got the wireless internet version?

Can you get telly on it?

Hope it works out for you - that stuff's scary
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 11th, 2006, 6:25pm
Have rewrote opening topic Please read the top . I hope you see how seriously This could help.
Title: Re: The road to the cure!!!!!
Post by mynm156 on Mar 11th, 2006, 7:11pm
WOW,  Sounds like its been a good thing for you and who knows what it might mean for the rest of us but I would not call it a cure if you have to keep repeating it it is only a treatment not a cure.  Stay Pain Free and Keep us all Posted!

MYNM156
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 12th, 2006, 8:53am
Yes I knowone person dosen,t make it a cure> Thats why I have been spending my time here.Trying to convince people that this is a viable alternative to other procedures. their is no official study of this going on ,and as far as I know ,nobody else has even tried this.The pain was so severe and my life was such a mess, if I would have died during surgery .I would of consider that a victory. LOOK PEOPLE I not trying to sell anything> I just know its going to take sevsral people to do this before it becomes accepted and can help thosands. I am willing to meet anyone any where to discuss this> I will gladly give out my phone number, by way of private E mail. MY ULTIMATE GOAL IS TO DEFEAT THE DEAMON WOLDWIDE!!!!!!!!!!!!
Title: Re: The road to the cure!!!!!
Post by thebbz on Mar 12th, 2006, 7:10pm
[smiley=huh.gif]
This is my first time so I will try to be gentle.
Zeus,
While I am sure you are very happy to be pain free finally, we are very glad for you however anyone reading this should know that this is very invasive and should not be considered lightly,. throwing the words cure around with trying to convince people this is the way is very dangerous. People come here in extreme pain confused and searching. I dont believe it serves any good to tell them they should go and have brain surgery done. You are now in a honeymoon phase and I think it is premature to recommend this in this forum.
Anyone reading this please consider the many less invasive therapy's and treatments. Please do so under the supervision of a neurologist.
Again, I am so glad for you Zues to be pain free and hope it stay's that way.
jb :P
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 12th, 2006, 8:19pm
Yes this is very seriuos but so is living with this HELL for closed to 30 years like I have. You dont think I was not scared leading up to the surgery ,you nuts.the bottom line is that this was done as outpatient surgery and I was back to work in about 3days.This is not BRAIN surgery, Its a removable stimulator placed under the skin ,Through a incision less than one and half inch long I not recomending everyone run out and do this just people who has tried everything eles and are considering nerve buring,or real brain surgery,
Title: Re: The road to the cure!!!!!
Post by chewy on Mar 12th, 2006, 8:43pm
Do you take any meds for other issues?
Title: Re: The road to the cure!!!!!
Post by Linda_Howell on Mar 12th, 2006, 9:22pm

John started this subject  in 2 different places, so I suggested we take it to this thread.   My last post to him:


Quote:
--------------------------------------------------------------------------------

   Quote:I will be happy to feel you in.    




   Typo, I hope.    



No one is going to take anything seriously around here without one heck of a lot of information.  We've been here a long time and have heard it all.   Maybe you should just start with your HA history and go from there.  
Tell people about how you decided to go this route, EXACTLY what the criteria was for you being a patient for this, how was it done, Dr. Credentials that you checked on,  etc etc etc.......

But lets do it in the other thread you started and not in 2 places at the same time. (which we understand you're new here and are learning)  

Linda  



O.K. John?   hope you can fill us all in.  

Linda

Title: Re: The road to the cure!!!!!
Post by maffumatt on Mar 13th, 2006, 1:21pm
John, we have a convention every year, I am sure you saw the thread in the meet and greet section, do you think you can show up and share your story, I am episodic so it wouldn't apply for me, but there are alot here that are chronic. If you continue to be pain free up to then, in my view it would be an achievement to take note of. Thanks for stepping in and shareing, there are alot of people here who are pessimistic about it, I should have warned you about useing the cure word,  but you have to understand how many snakeoil salesmen we get here selling their cures. After 30 years of pain I am sure you can understand that.
Matt
Title: Re: The road to the cure!!!!!
Post by StressFree on Mar 14th, 2006, 1:31pm
Hi John,

I've had success, without the surgery, using a TENS unit. I made several posts regarding my experimentation with it. I had some curious responses, some saying it didn't work for them, and many saying it would only make things worse if they tried it. The thing that strikes me is your description of the sequence you've used, as well as the success.

With externally placed TENS (transcutaneous electrical nerve stimulation) I used it to abort attacks, or at least to distract if a high level attack was already occurring. After using it regularly, attacks seemed to be less severe and less frequent. Perhaps due to meds beginning to work, or getting benefits from both! I continued to use it in morning and evening regardless of having an attack or not in hopes that it would alter the nerve paths to help stop the cycle.

I used it over jaw to temple, and also accross the back of my neck and head going into the hairline. I would alter frequency and amplitude (pulse and strength) in order to get relief. The pads are used with gel to make contact to the skin. Some folks replied that hair would get in the way - true, but it would not be impossible to use anyway - just messy! Others noted that the electric currents would not go deep enough. Well, with my jaw and eyelid jumping at higher settings I think that is not quite correct either.

I'm very happy to hear of your success. Please post if you find out frequencies and voltages used in your device. I think the fact that you are able to control it yourself is a key to success with things like this. I recommend the TENS to anyone willing to try the electrical relief route. They cost about $100 from the internet.

Please keep us posted if you have continued success! PFDANs!!! Rich
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 14th, 2006, 1:49pm

on 03/13/06 at 13:21:43, maffumatt wrote:
John, we have a convention every year, I am sure you saw the thread in the meet and greet section, do you think you can show up and share your story, I am episodic so it wouldn't apply for me, but there are alot here that are chronic. If you continue to be pain free up to then, in my view it would be an achievement to take note of. Thanks for stepping in and shareing, there are alot of people here who are pessimistic about it, I should have warned you about useing the cure word,  but you have to understand how many snakeoil salesmen we get here selling their cures. After 30 years of pain I am sure you can understand that.
Matt
  Matt ,will talk to wife about convention but it on otherside of country from me. I used up most of my vacation time on surgery,but i,ll see what I can do. Thanks for understanding, I know the word cure may be a little strong for some people, but after suffering for as long as i have to be PF it turely is the cure for me. I just a blue collar worker not a sellsman.                            
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 14th, 2006, 1:58pm

on 03/14/06 at 13:31:36, StressFree wrote:
Hi John,

I've had success, without the surgery, using a TENS unit. I made several posts regarding my experimentation with it. I had some curious responses, some saying it didn't work for them, and many saying it would only make things worse if they tried it. The thing that strikes me is your description of the sequence you've used, as well as the success.

With externally placed TENS (transcutaneous electrical nerve stimulation) I used it to abort attacks, or at least to distract if a high level attack was already occurring. After using it regularly, attacks seemed to be less severe and less frequent. Perhaps due to meds beginning to work, or getting benefits from both! I continued to use it in morning and evening regardless of having an attack or not in hopes that it would alter the nerve paths to help stop the cycle.

I used it over jaw to temple, and also accross the back of my neck and head going into the hairline. I would alter frequency and amplitude (pulse and strength) in order to get relief. The pads are used with gel to make contact to the skin. Some folks replied that hair would get in the way - true, but it would not be impossible to use anyway - just messy! Others noted that the electric currents would not go deep enough. Well, with my jaw and eyelid jumping at higher settings I think that is not quite correct either.

I'm very happy to hear of your success. Please post if you find out frequencies and voltages used in your device. I think the fact that you are able to control it yourself is a key to success with things like this. I recommend the TENS to anyone willing to try the electrical relief route. They cost about $100 from the internet.

Please keep us posted if you have continued success! PFDANs!!! Rich
To me thats a great Idea, almost wish I would of thougt of that, it may of saved my insurance co about 85,000.
Title: Re: The road to the cure!!!!!
Post by Linda_Howell on Mar 14th, 2006, 9:20pm

 
Quote:
Matt ,will talk to wife about convention but it on otherside of country from me.


The next convention is in Milwaukee, WI.  John.   That's not exactly the other side of the country from you. lol

Try to make it.  July 14th, thru the 16th.


Linda
Title: Re: The road to the cure!!!!!
Post by unsolved1 on Mar 15th, 2006, 4:24am
It's definately NOT a cure for all. I had a bi-lateral Occipital nerve stimulator implant at MHNI in MARCH 04'. I only had it for a week. It was a 'trial'. It didn't help anything, just added a shock to the mix.  >:(

Glad others are possibly getting some relief.

UNsolved
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 15th, 2006, 6:08am
I afraid you may not gave it long enough. Nieter ons or tns work very well the first week. It took some time of searching through different freq and amplitude to find one that worked. W ith the ons it took about 2 weeks, with the tns about a week.
Title: Re: The road to the cure!!!!!
Post by fireball on Mar 15th, 2006, 11:38am
I have to respond to the negative replies.  In defense of John, he is only sharing his experience.  He isn't telling everyone to go try it.  Isn't that what this site is for?  Everyone is responsible for doing their own research, talking to their own doctor, and making a decision that is best for them.  
I'm excited to know that there is another option that I didn't know about.  
I started the post "gamma knife" because I've really been pushing for my husband to have that done.  He has tried every other non-invasive treatment that we know of.  He has been suffering for 8 years -- I can't even imagine another 22!
Now, with information about the trigeminal implant, we'll be discussing this new option at his next appointment.  
I think that sharing and supporting is so important.  Getting on this site to do just that is such a blessing.
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 15th, 2006, 2:55pm
Fireball Thank you so much for your support. I really only mean to help people from living a very hard life. I remember one night inpeticular, I had been visited by the beast 4 times .The last visit I was so totaly wore out, that I just could not fight any more. My wife took me to the Er. At the hospital we incounter a triage nurse that had no bussiness doing her job.She told me to wait in the waiting room, and that it would be several hours before i would be seen. My wife then decided to take me somewhere else. At the next hosp, I made it to a Dr. He acused me of drug seeking and told me no headache could make a person act like I was. Totally dejected and still rockin I pleaded with my wife to take me home, she did. When we reach the house I jumped in my truck and took off{I had reach the end couldn,t do this anymore ] I raced down the dark streets hardly able to see from the tears and pain. I reach the boat landing down by the Ohio river, and sat in my truck trying to muster the nerve to drive in. Every thing started racing through my mine ,my life,my fathers death ,my wife ,my kids,what had I done so bad in my life to bring on this curse. Finally it dawn on me I was able to concentrate ,to even be able to think about thes thing ment the beast was leaving. I started thinking more clearly, what was I about to do run out on my wife ,who had always been there for me who would fight my battles with the triage nurses, who would rub my temples and let me know I wasn,t alone.My son,who had just turn 13. The same age I was when my father died. I had always swore to my self he would not endure growing up the way I did.Thats when I relized that pain can not kill you only you can, and know matter how bad it gets You have to find the strenght to push on. At that point I decided to find a way to beat this thing not only for me ,but hopfully everyone. I started volunteering for any experimental cures for this thing that I could,[ If you see my med list and other procedures I had tried before this you know what I mean.] Anyway I only am trying to help and not trying to sell anything, or force my oppion on anyone.            SO please stay strong   Dont give up and dont give in    
Title: Re: The road to the cure!!!!!
Post by zuesthedog on Mar 15th, 2006, 3:03pm

on 03/14/06 at 21:20:20, Linda_Howell wrote:
 

The next convention is in Milwaukee, WI.  John.   That's not exactly the other side of the country from you. lol

Try to make it.  July 14th, thru the 16th.


Linda
Linda briefly discussed it with wife, Probably will make it. Had promised the kid a real vacation this year [now that I,m better]. Think we will stop by for one night[probably friday] on our way to the grand canyon. Looking forward to meeting you ::)


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