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Title: I Saw A New Neurologist... Post by Langa on Jan 5th, 2005, 10:00am I saw a new Neuro yesterday! My story is a little long, so thanks for your patience, but I'm excited to tell it. My first and old Neuro was a shmuck who rushed me out of his office, wouldn't answer any of my questions and told me only men got clusters. He finally gave me Depakote because I insisted on a preventative and Oxygen also because I insisted on it. Therefore, I decided next time around I would get a different Neuro. Glad I did. With my insurance I don't need a referral so I just looked in the provider book and found him; I especially liked the fact that his office is only 1/2 mile from my house. I expected to go in there and have to educate him on clusters or fight with him on a misdiagnosis. Thankfully, I was wrong. After he asked me about 8 questions, he diagnosed me as Episodic Cluster Headache sufferer. I told him I was a bit concerned about becoming chronic being that this cycle came so soon after the last one...he said I shouldn't worry about that right now, that I have to be in cycle at least a year before I could even think that (at this point, I knew he knew his stuff). He asked me what preventative I was on before, I told him Depakote, but that I wanted to know more about the Prednisone Taper/Verapami combo I hear so much on this site. He answered he'd rather stay away from Prednisone. Actually he said he hates it because of it's side-effects long-term use...rotting bones, etc. (This really convinced me he was good). So he said he wants to start me off on a low dose of Topamax 25 mg, imitrex injections - ANY FEEDBACK ON IT WOULD BE APPRECIATED. He asked if there was anything else I used in the past that helped. I told him Oxygen. So I asked him for a script and he told me to have the respiratory place call him directly so that they could tell him exactly what it was that they gave me before so that then he could prescribe that. (this shocked me and first thing this morning I had them call him and the respiratory are coming by tomorrow night to set me up). Then he gave me a quick physical, and left the room and came back with a bag of of goodies... :o An Imitrex nose spray which he said I should use on a shadow (I was shocked he used that word) as it really doesn't do much on an actual cluster (I could vouch for that), dissolvable 100 mg Imitrex tablets to try, a statdose pen and 9 boxes of 6 mg Imitrex injectables, 2 per cartridge, and a month's supply of the 25 mg Topamax. He said that's what he had in the office as samples, but that he would write me, as I requested (get it? as I requested), a script for the individual dose vials and insulin syringes. He also wanted to know if I had ever had brain scans done, I told him yes twice - an MRI and a CAT Scan...both normal. So tonight I have to go for a Brain Wave Scan...an EEG, I think it's called. He said he was very impressed at how much I knew and I quickly told him about this site and asked him if he would tell his other cluster headache patients about this site and he took down the info and said he would. Before I left he took my hand and said "Take care of yourself now, and I'm really sorry that you have to suffer with something this awful. Come back in a month, I want to see how you're doing". It was all I could do not to bust out crying like an idiot. Well, thanks for reading my story...just wanted to say that I found my Neuro...finally. If anyone in the Hudson Valley, NY area needs a good Neuro let me know. ;;D Langa |
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Title: Re: I Saw A New Neurologist... Post by nani on Jan 5th, 2005, 10:03am [smiley=sayyes.gif] Gotta love a doc who has a clue!! Good for you, Maria! |
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Title: Re: I Saw A New Neurologist... Post by Langa on Jan 5th, 2005, 10:08am Yes, it's an awesome feeling after 26 years Nani! ;) Langa |
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Title: Re: I Saw A New Neurologist... Post by becky8 on Jan 5th, 2005, 11:05am Great Langa, Forget the trex tablets though, takes too long. Is the spray 20mg or lower. 20mg works for alot people but I LOVE the injections. Next time ask for the Vials of trex, its easier to use and you don't use the same needle over again. Use ONLY 3mg (the vials are 6mg) it works for 2 injections and no rebound ( I can go right back to whatever I was doing) As far as preventive I am on verapmil/ lithium combo and no side effects (only very little hand temor) very little though. This combo works good for alot of people. My neuro wanted me to take topamax and I said no because everyone here said it made them really dumb. so please just check it out. Oh, I am chronic. Good Luck sis, |
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Title: Re: I Saw A New Neurologist... Post by vig on Jan 5th, 2005, 11:21am That's fantastic Langa, I don't think it could be scripted better than that. Be careful with the topamax... many here call it DopeyMax. It makes retards out of people. No slur intended... [smiley=laugh.gif] and he's right about prednisone. Avoid it at all costs, even if it DOES work. and Becky8 is right about the tablets, they're not really effective, but you can try them, no harm. |
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Title: Re: I Saw A New Neurologist... Post by Langa on Jan 5th, 2005, 11:24am Thank you Becky/Vig... Becky, the nosespray is 20 mg...Frankly, I have no intention of using it...I hate the taste... The tablets are also useless, but he only gave me one to try because it's dissolvable...I guess they're new and he said they work faster than the other ones... I'm sticking with the injections. Is the Topamax bad even at such a low dose??? Langa |
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Title: Re: I Saw A New Neurologist... Post by Mr. Happy on Jan 5th, 2005, 11:42am on 01/05/05 at 11:24:52, Langa wrote:
Not usually. Problem is, it's not usually effective at such a low dose. Levels need to be increased slowly, otherwise the side effects can be a tad on the heavy side for most folks. Would have been neat if you'd been able to go for the Verap first, and hold off on the Topa in case the Verap didn't work. Check out the thread on the meds section about Needle Free Imitrex Injections. We've got a lucky contestant that's finally reporting on the use of the Injex 30 (http://www.injex.com/products/injex30.asp). Pretty cool if you can get that setup, methinks. Make sure and add your Neuro's name to the OUCH doctors page - http://www.clusterheadaches.org/doctors.htm |
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Title: Re: I Saw A New Neurologist... Post by E-Double on Jan 5th, 2005, 1:19pm That's awesome news!!! It's a good feeling! Been sitting on a script of Topamax for a while.... Quote:
Was and am a bit scared because of the "side-effects" I'm also on verapamil and need to bump that up as well... Don't mean to take your thread. Congrats and wishing you relief!!!! Eric |
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Title: Re: I Saw A New Neurologist... Post by lionsound on Jan 5th, 2005, 3:47pm Wow! That sounds like it went fantastically well! Good for you, Langa! :D It can be so frustrating when doc's are clueless and so wonderful when they listen. Thank you for sharing your story. Be well and PF... -lionsound |
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Title: Re: I Saw A New Neurologist... Post by Langa on Jan 5th, 2005, 4:08pm Thanks Lionsiond and PF wishes to you too! Langa |
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Title: Re: I Saw A New Neurologist... Post by bigred on Jan 5th, 2005, 4:31pm Kudos for you Langa. He sure is more educated on our HA then the docs I see hear in my area. I just have to keep looking, and rely on faithful people just like you who understand the dark dance we do. ;) |
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Title: Re: I Saw A New Neurologist... Post by Ronny on Jan 5th, 2005, 5:57pm So the white elephant does exist. Way to go. The neuro i went to does know his stuff too but wasnt very cooperative in prescribing drugs. I almost had to nag . |
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Title: Re: I Saw A New Neurologist... Post by rickyshot on Jan 5th, 2005, 6:46pm I know the feeling. Twenty years ago when all this started for me I had so many misdiagnosis to the point I was believing I was crazy. Finally in the ER a female doc said I was having migraines and she took me seriously. I cried and cried I was so relieved. When I moved here to Montreal I found a good neuro right off the bat and he said I had to take my ha's seriously as I have complicated migraines as well as clusters and I was rare and at risk for stroke. Just to have someone who knows and cares who does not pat you on the head (especially as a woman) and saying there there dear......About the Topomax let me know how it worked for you. It turned me into a suicidal zombie and I had to go off of it after only two weeks. I never had such a bad reaction to a med before. The neuro was sorry as so many people had great results from it . Me the shlomozzel...... |
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Title: Re: I Saw A New Neurologist... Post by docdog on Jan 7th, 2005, 7:12am Langa, I too went to a new neurologist just yesterday and my story is very similar. He prescribed 50mg Topamax 2 times a day, gave me Imitrex injections and inhaler samples and a script for O2. He said he has had a lot of success with this treatment. The only difference was the dosage of the Topamax. He said he wanted to hit the cycle hard and that the Topamax was the best preventative he had found recently with the least amount of side effects. He loaded me up with samples , and required no MRI, CT, or any other tests that we have all had previously. He is well aware of the sire, and OUCH and recommended getting a copy of the description of CH to provide to my employer. It looks like we are making some progress in the medical field. |
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Title: Re: I Saw A New Neurologist... Post by Langa on Jan 7th, 2005, 9:00am DocDog, let me know how the topomax works for you. You're taking much more than me. I decided to try the Topomax being that it was on such a low dose. No hits in two days. I have been shadowing and the oxygen helps with that, but no bad hits yet. Don't know for sure if it's the Topomax or just the beast tricking me. :-/ I'm glad you found yourself a good Neuro as well. ;) Langa |
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Title: Re: I Saw A New Neurologist... Post by unsolved1 on Jan 7th, 2005, 10:32am Glad to hear you found a good doc. The Imitrex he gave you is "gold". He could probably supply you as needed for the Trex. (My neuro does) As far as the Topo ... HATE IT ! 25mg is a LOW dose. Doubt it's helping your CH. (I took 200mg day) PF Wishes, Unsolved |
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Title: Re: I Saw A New Neurologist... Post by chucks_CH on Jan 10th, 2005, 7:28pm Topamax is teh greatets think sinec sLiced Bread. I'ev had NO side efetc.. Ha!! Ha!! |
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Title: Re: I Saw A New Neurologist... Post by Langa on Jan 11th, 2005, 9:29am on 01/10/05 at 19:28:49, chucks_CH wrote:
Oh yeah, i'm definitely going to start taking it now... :-/ LOL. Langa |
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