Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
After being misdiagnosed for 16 years... (Read 1009 times)
neofortune
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
After being misdiagnosed for 16 years...
Mar 27th, 2015 at 3:18pm
 
Greetings!

After 16 years of misdiagnosis (previous doctors thought my headaches were migraines or sinus infections or some combination of the two), in February of this year, a neurologist finally diagnosed my condition as cluster headaches. 
I have since taken the time to read many of your posts here on this message board, and just wanted to send a note of thanks for sharing your experiences dealing with CH, as many people I’ve spoken with have never even heard of CH.

In my case, my CH typically stay dormant for a couple years, and surface when I do something stupid like take an overnight flight, drink too little water, drink too much wine, and eat too much bacon.  That is probably what happened to trigger my latest CH attack in mid-February – I pretty much did all of the above within the span of a couple days, and continue to suffer for it.
My regular neurologist, thinking once again it’s migraines, prescribed nadalol and relpax.  After a week of nightly attacks, I went to see another neurologist for a second opinion / diagnosis.  She finally diagnosed it as CH, and prescribed Topamax as a preventive, and gave me Treximet as an abortive.
After 2 weeks on Topamax I realized I couldn’t stay on it because of the side effects.  During these 2 weeks I continued to have headache attacks almost every night, and I was starting to get depressed.  I tried to schedule a follow-up appointment w/ Neurologist #2 to discuss a different medication regimen but she was on vacation and couldn’t squeeze me in until for at least 10 days.  So I went back to Neurologist #1, explained that I had seen a 2nd specialist who diagnosed it as CH, and after quite a bit of skepticism and huddled meetings with his physician’s assistants, he finally agreed that I had CH, and prescribed me veraprimil (at my request!  I had to keep insisting on it!) – 80mg x 3 pills per day, while telling me to immediately stop taking Topamax.  This was on 3/13. 
Around the same time I finally got a prescription for Veraprimil, I guess the Topamax finally started working in my system, and I no longer had attacks.  I was worried about the attacks resuming during this transition period, but aside from shadows, I have not had an attack in 16 days as of today.
I could really use some guidance from the veterans out there regarding some of my below questions… any assistance you could provide would be appreciated!
•      I continue to have shadows – both in the form of KIP 2 of KIP 3 stabbing sensations that last for a second (only happens like once or twice per day), as well as painless but more constant pressure in my sinus areas, particularly in the evenings.  As long as I am pain-free, am I good with my current medication dosage, or should I request an increase in the dosage until it gets rid of the shadows as well? 
•      I continue to have sensitivity to light and sound even while on Veraprimil.  In the experience of veterans, do you continue taking Veraprimil until the sensitivity to light and sound go away completely, or do you begin tapering off after a fixed period being pain free?
•      I sometimes would wake up in the middle of the night feeling flushed, heart racing, and could feel an attack coming, then instead of pain, I would feel a painless pressure envelop my right temple (where I would normally have the stabbing pain during an attack).  I wonder if that’s the veraprimil preventing the pain part of an attack?  Is that how it actually works?
•      I have read many of you try the “beer test”.  Do any of you attempt the test while still taking Veraprimil?  Or do you always wait until you’ve tapered off of it?
•      My “shadows” seem to surface most aggressively when I am working, staring at my 24” monitor.  Any suggestions for how to manage this / get around this?
•      I normally wear glasses but during my CH cycles, I can’t wear them because they cause too much pain to my sinuses (does that make sense for anyone else?)  I have been wearing contacts but I wish I could continue wearing my glasses… anyone have any experience with something similar and found a workaround?

Please accept my apologies for my long-winded introduction but this kind of feels like I just found out I have the flu when my doctor dismissed it as a common cold.  Just trying to get my head around what my expectations should be in light of the corrected diagnosis. 
Thank you all for your insights and as I battle this cycle I’ll be sure to share any significant developments!

Best regards,

-Neofortune

P.s. thanks again Batch for all that valuable info on the D3 regimen... i'll definitely check it out if i get hit with another attack.
Back to top
  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: After being misdiagnosed for 16 years...
Reply #1 - Mar 27th, 2015 at 4:05pm
 
Neofortune,

Welcome... Years of misdiagnosis, or none at all, is not uncommon. But you're in the world of expert patients here, not the Medics.

It's  not a long winded post. You're doing exactly the right thing, giving loads of background and asking lots of questions.   

There are lots of people here more expert than me on giving good advice, particularly where Verap is concerned and I'm sure they will.

My bit of advice is, don't wait to start the D3. Get it going straight away.

I was an episodic sufferer for 11 years until I changed to chronic (every single day for 2 years) and the D3 regimen has improved my life beyond measure. I only started it about 9 weeks ago and I will never stop taking it for the rest of my life. The advice for episodic sufferers is also to take it continually, whether in cycle or not.

Keep reading, keep asking and keep well.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: After being misdiagnosed for 16 years...
Reply #2 - Mar 27th, 2015 at 4:10pm
 
Welcome! Glad your life is improving.

Your experience with neurologists reflect the limted training they get and why we recommend headache specialists, if available to you.

The borderline symptoms: might try an incrase in Veap. and see if that helps. The mild pain beween cycles is the only tme when regular pan meds help for some; worth a try.

Delay alcohol for 2-3 weeks after you think a cycle may have ended. No way to know except going dry.
Back to top
  

Bob Johnson
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: After being misdiagnosed for 16 years...
Reply #3 - Mar 27th, 2015 at 4:56pm
 
Welcome Neofortune

Things are getting complicated with the topamax and then changing over to verapamil. Since verapamil typically takes 7-10 days to become effective then the stopping of the attacks is unlikely to be due to it. It is also not common for preventives to be 100% effective, so it is possible that your cycle has come to an end. What will help answer what it is is if they return once the topamax is out of your system before the verapamil becomes effective.

Verapamil at 240mg a day is a low dose, most people need 360-480mg a day but some need to go to 1000mg a day.

With any medication there is always a balance between the benefit it gives compared to the side effects, so for your question about increasing the dose, this is for you to answer (with your docs) as to what the net benefit is compared to the side effects plus the impact of your own medical history which might dictate a maximum dose or similar.

For your sensitivity to light and sound, is this something you have ongoing, all the time, or is it something that you only get around attacks?

Verapamil and other preventives work by just stopping the CH from even starting, so the experience you describe a night does not fit with a CH being prevented. It actually sounds like something I get with my migraines where I can get the prodome phase of a migraine that either does not progress beyond the prodome or it progresses as a silent migraine where I get all the symptoms other than the pain.

It is possible to get more than one headache type with the CH / migraine combination being the more common for people here. This makes it a lot harder for doctors to diagnose and treat, which is yet another reason for us suggesting people see headache specialists.

People try the beer test when they think they are probably finished with a CH cycle. First off, it is only any good as a test if beer will trigger a CH for you (it doesn't for everyone). Then do it at home, with an abortive to hand so if your cycle isn't really over yet then you can kill the CH off quickly.

For the shadows with the 24" monitor, it is possible that the shadows are there but the act of concentration is what makes them stand out more. Another possibility is that you might need an updated glasses prescription as eye strain might be contributing to the shadows feeling worse. Not everything need be just due to CH.

The issue with wearing glasses is something I've not seen people report. Do mention this to your doctors as it could be something that needs attention.

Hope this helps. Keep reading and asking questions.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!