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Off the Verapamil and Lithium. Could use some help (Read 3080 times)
Dan K.
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Off the Verapamil and Lithium. Could use some help
Sep 20th, 2015 at 7:21pm
 
Hello all. My name is Dan. I have suffered from cluster headaches for almost 13 years. I am 33 years old. I am very familiar with this community. Over the grueling past 13 years with the beast, I have read through posts on this site at least once a month...sometimes once a day. I may have only posted once on here.

I am posting because I stopped verapamil 240 mg a day twice daily after 12 years on it. I have also stopped Lithium 300 mg 3 times daily after 1 and 1/2 years on it. I tapered down over the course of the last couple weeks. I did this because both medication consistently started triggering kip 7 - 10 CH attacks about an hour after taking one, the other, or both. Also, I was disgusted with the amount of weight I gained and hair lost while on Lithium. Both of these meds, particularly Lithium, robbed me of a significant amount of thought processing speed and more importantly...my soul.

Verapamil worked like a charm with relatively PF months (usually through Long Island winter) until 4 months ago. I still got hit with vicious cycles here and there but they were manageable and predictable. When I began taking Lithium, I was certain I found a cure. After adding lithium, I went 7 months with maybe 3 or 4 Kip 2 CH for the duration.

I also take vyvanse and klonopin daily. These are my only medications besides imitrex stat over the past week and a half. Since I have been off the Verapamil and Lithium, I have noticed a few things. First, and most important to me, I feel like I have regained control of my mind. I am actually somewhat happier. Second, I now get hit with 1 to 3 CH daily. I always get at least 1 at night, 1 - 3 hours after I fall asleep. Interestingly, If I stay active all day, only take the vyvanse, drink several cups of coffee, and stay off the computer most of the day... I only get the 1 CH after falling asleep. I can counter this by taking a sumatriptan (sometime zolmitriptan) tablet before bed. The only problem is that this mix of caffiene and vyvanse is not suitable to daily living because I am way too edgy and wired. Unfortunately, when I take the Klonopin to calm me down, I feel great mentally, but I almost always get hit with a CH.

I am not sure if I am better off without the verapamil and lithium from a pain perspective but my mental acuity and health is definitely better. I KNOW THAT I NEED A PREVENTATIVE. There is more to my CH story with regard to treatments tried but this is already a long post. I AM NOT SURE WHAT TO DO NOW. I AM GRATEFUL FOR ANY GUIDANCE OR INSIGHT. Questions and/or answers are welcome. PFDA to all! Smiley 
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Mike NZ
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Re: Off the Verapamil and Lithium. Could use some help
Reply #1 - Sep 20th, 2015 at 8:50pm
 
Hi Dan and welcome back to posting. Any time you have questions, just post as we may be able to help.

Have you tried topamax as a preventive? Although it can result in some people getting side effects like mental fogging, difficulty in finding words, etc. But it works well for some.

I'd also strongly suggest you look at using vitamin D3. This has worked wonders for my CH giving me over 3.5 years of freedom from CH pain. Give Batch a PM or look for his posts as he is the guru on this.

Have you tried oxygen for aborting CHs? This can work very well. Read up about how we use it - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Instead of coffee, have you tried using energy drinks with both caffeine and taurine? This combo works well to ward off CH shadows, plus can help with a CH too.

What else have you tried?
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anubis44
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Re: Off the Verapamil and Lithium. Could use some help
Reply #2 - Sep 21st, 2015 at 12:08am
 
Dan,

In solidarity, fellow survivor.

I've been getting CH since about 2007. I'm a 45 year old male. Now that I'm on a drug plan through my work (since 2011), my main go-to when I feel a CH coming on is Zomig (zolmatriptan) 5mg nasal spray. They are stupidly expensive ($100 for six) but luckily, my drug plan is very good and covers them. The nasal spray version of zolmatriptan is extremely effect at stopping a headache if I catch it before it actually starts (takes about 10 minutes to kick in).

As a preventative, I had been taking verapamil, 2x120mg, 3 times a day for about 8 months when I decided I was sick of always feeling so fatigued. So back in July of this year, I stopped taking the verapamil, and for about 5 or 6 days, I had no headaches. Then I ate some Vietnamese food with MSG and got a headache. I've been getting two CH a day since that MSG-induced headache for two months, and last night, I got 4 headaches in one night (a record for me), so I've decided I just have to go back on verapamil.

I've come to the conclusion that the following are probably triggers for me:

1) Certainly, alcohol (which I figured out a long time ago).
2) Pretty certain that staying up late/upsetting my wake/sleep cycle brings on CHs.
3) Most probably MSG triggers CHs for me.
4) I'm trying to confirm this one, but I'm starting to suspect anything that raises my insulin levels (sugar, lots of honey, etc.) 
5) Also in the category of 'trying to confirm' are possibly things like vinegar, or foods containing vinegar.

My suggestion to you is that Verapamil may be the only effective preventative at this time, but the Lithium you can probably do without. I tried lithium for about a month, and I couldn't concentrate, so I just stopped that and never tried it again. However, even verapamil will not stop CH from happening if you are doing other things that are definite triggers.

Also, for what it's worth, I tried oxygen (medical oxygen, properly dispensed, etc.) and it really didn't work for me. Zolmatriptan nasal spray is far more consistent and effect than oxygen for me.

Good luck, and let me know what happens with your treatment routine and what works/doesn't work!
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« Last Edit: Oct 4th, 2015 at 1:45pm by anubis44 »  
 
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Dan K.
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Re: Off the Verapamil and Lithium. Could use some help
Reply #3 - Sep 21st, 2015 at 3:38am
 
Hey Mike,

Thanks for the welcome. To answer your questions, I have tried Topomax but it caused weird scary side effects like severe tingling all over my body, panic, and other weird stuff that is hard to explain. I am not sure if it works because I never lasted with these side effects.

I am on the verge of starting a vitamin D3 regimen this week. I am extremely apprehensive to do this as almost everything has been a trigger for me lately or has cause bad side effects. For example, I took 3 mg of melatonin tonight for the first time in years and it triggered a mild attack that was fixed with an ice pack followed by another CH that switched sides from left to right. This is unusual for me. Not sure what it means if anything. I get hit every night regardless. Still, I will try the D3 regimen and get my levels tested as soon as possible.

I have tried oxygen. Sometimes it works and sometimes it doesn't. I believe the problem is the type of O2 equipment and flow I have used. For example, O2 administered in the ER seems to work. I made the mistake of buying an O2 concentrator machine which does absolutely nothing for me. I really need to get set up with proper O2. I have some illogical reservations about storage safety but maybe you can help ease those concerns.

Coffee works for me a lot of the time. The only problem is that I need alot of it and relief is mostly temporary. The other issue is that high levels of caffiene make me very moody, anxious, and edgy. I have not used the energy drinks with consistency. I do not really view these as 1st line responses. I always wind up shooting up the sumatriptan.

I could probably start an interesting discussion on the treatment I have tried. Here are some of them in no particular order:

Verapamil - recently became a trigger after working for over a decade. It did almost kill me once (several years ago). It caused a 3rd degree heart block which sent me to the ER unconscious. Doctors saved my life. I was admitted to CCU. No need to elaborate. Can't believe I went back on it after that.

Lithium - I am certain it kept me PF for several months in combo with verapamil but now it is also a major trigger

Botox A - I think it helped ease the intensity of attacks over a few months. It may have slowed frequency. I do get hit with a very painful 2 week cycle with 3 - 7 CH daily a few days after getting Botox, but then there is a major drop off. My Neuro always warns that this will happen and not to worry. I REALLY WANT TO TRY MYOBLOC (BOTOX B) as a family member swears it put CH into permanent remission.

Occipital Nerve Blocks - Really not sure it did anything. Maybe a little.

Magnesium infusions: maybe did a little. not noticeable.

Prednisone: Very effective but it turns out I am allergic to some steroids. It sent me into a prolonged scary mental state. Sent me to ER. No need to elaborate. Cant use it.

Dexamethasone: Another steroid that sent me to the ER. All of my muscles failed. I thought I was paralyzed. There was sugar in my urine. I am not diabetic. This drug caused this after one regular dose. I was admitted to ICU I believe. Docs still scratching their heads on this.

Indomethacin: Useless. I don't know. Maybe it did something.

Infusion cocktail made by my Neuro: Although he gave me a list of the drugs, I still have no idea what is in there. I will ask him and post it. All I know is that I sit there with an IV drip for a few hours then begin to nod out. I wake up to discover that I am 100% pain free for 1 to 4 days max. Usually 2 days. It also seems to break bad cycles.

Vyvanse: This is an interesting one. It is an amphetamine not prescribed by my Neuro. In fact, he is very much against me taking it. All of my doctors actually seem to agree that this will trigger CH. However, I find vyvanse to be very effective at both preventing and aborting CH. The trick is that I need to stay relatively  physically active and not read too much, too fast. The only problem is that it makes me incomfortably edgy and wound up.

Diet: I have tried to adjust my eating habits. I truly believe there is some hope for relief here. I have eaten nothing but green vegetables for a few days during a bad cycle and it has broken. This does not always work. I have never been able to stay on a bland high veggie diet for long so I cant tell you how well it works in the long run.

H2O: There are days where a gallon of cold water will stop a CH in its tracks. On other days it just keeps me in the bathroom banging my head, shooting imitrex.

Ice Pack: Surprisingly effective for shadows and some CH. The pain usually comes back after removing the ice pack.

Hot/Cold Shower: Sometimes this is all I need. Scorching hot or Ice cold or combo of both. More often than not, this treatment provides relief but not enough.

Strenuous Cardio exercise: Has aborted severe CH within minutes. On days where I take vyvanse, start early, and really get my heart pumping, I can stay PF for most of the day. This is not always the case though. Most of the time when i start to slow down, the CH hits. It is also not very practical.

Avoiding digital screens all day: Surprisingly helpful, but not enough. Maybe takes away 1 CH all day.

Intra-nasal Cayenne Pepper: This is very painful and nasty...but somewhat effective. I have used this method when out of Imitrex and it works about 50% of the time. Only problem is that it causes a long lasting intense burning sensation in my nose, eyes, throat, and head. It can be unbearable. If it doesn't work then you just added more pain to the CH.

Accupuncture and Accupressure: Useless for me. Triggered CH.

Stress Reduction and avoidance: I advise it. There are certain kinds of stress that are absolute triggers for me. Work and family stress are big ones. Relaxation, however, triggers CH too. I try to find a balance. Stay productive but not stressed. Not easy.

Cognitive Behavioral therapy: Truly helps in dealing with the emotional damage caused by CH. Worth doing.

Hypnosis: Didn't work for me.

Triptans: I dont know what I would do without Sumatriptan stat dose. It is the only thing that alleviates my pain consistently. I understand it causes rebounds but what choice to I have? I find imitrex tablets useful for preventing CH for 2  to 6 hours. I know that it is meant to be a really shitty abortive, Nasal sprays take too long and don't always work. Maxalt and generic Zolmitriptan work but take up to 45 min. Sumavel works but hurts like a bitch to administer, even while in terrible CH pain.

I must have tried at least a dozen other treatments over the years but it's late and I cant think of them right now. Hope this is useful.

- Dan

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Mike NZ
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Re: Off the Verapamil and Lithium. Could use some help
Reply #4 - Sep 21st, 2015 at 4:49am
 
That is a really detailed response.

Do read up about D3 and PM Batch is is very helpful with getting people started. It has a success rate of about 80%, so hopefully it will be right for you.

Not too surprised about topamax, I tried it for migraine prevention and hated it with mental fog, being lost for words, metallic taste in my mouth and tingling, so just about the full range of side effects. Whilst it seemed to be doing ok as a preventive, the side effects were too much. But others have tolerated it well.

For oxygen, we need pure oxygen, so the oxygen concentrator just doesn't work for most people at all. So it is a matter of using oxygen cylinders. Being sensible with looking after it makes it safe. Don't smoke or be near a naked flame when using it. After using it, don't go near a naked flame for say 10 min. Otherwise the main risk is dropping a cylinder on your toe or similar. Lots of people are reluctant to use it at first, but they are soon converted to how wonderful it is.

With energy drinks or coffee, these are not a first line abortive, but more a case of something is better than nothing or for low intensity CHs.

When you've got something that works well, i.e. imitrex injections, it can be very hard to try anything else when something else might not work and the result is a lot of pain from a CH. I think everyone will understand that. But using multiple imitrex injections per day isn't always a great idea either. Oxygen has the benefit that you can use it many, many times a day.

Verapamil is known to potentially cause issues with the PR interval on an ECG, which is why people using it should have an ECG every few months to look for the warning signs. Although you're the first person I've heard of to have hand such a serious reaction to it. It works very well for most people.

With botox a lot of the medical research studies have found that it is little better than a placebo for CH, although for migraine it can help people. So I'd not put too high a hope on it being a magic bullet.

Predisione tends to work very well as a preventive, but it is for short term use only, typically 7-10 days whilst another longer term preventive builds up.

Indomethacin doesn't tend to help with CH, so for it not to help isn't too surprising.

For the infusion cocktail, this might have been DHE.

Vvanse - doesn't seem to be too well reported as being useful for CH (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register).

As for diet, well some people have found possible triggers in some foods, but this seems to not be too common. If you find something is a trigger for you, then avoid it. Try to use a headache diary to see if you can identify triggers.

Water can help some people, either enough to ensure they are not dehydrated or for some, lots, but I don't think it is a great preventive for most people.

Hot / cold - this is interesting. Some people find getting too hot or exercise can bring on a CH and for others, a very hot shower can bring relief. Similarly ice packs or frozen peas can work wonders. If one of them helps, use it.

Interesting about the impact of digital screens, every so often someone will say they are a trigger for them, but it seems to not be a problem for most.

Acupuncture and chiropractic - seem to be useless for CH.

Stress is very interesting as a trigger for people. For some it is high pressure that is a trigger, for some low pressure and others the transition from one to another. For me, high pressure works as a preventive, with holidays and weekends being CH (and migraine) triggers.

Triptans can be a very useful means to abort CHs, with the injections or the nasal sprays working best by far.

Keep reading and asking questions....


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shadia
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Re: Off the Verapamil and Lithium. Could use some help
Reply #5 - Sep 21st, 2015 at 5:23am
 
Good morning Dan ... well sorry to hear your Ch is difficult to treat. I am a nen ch sufferer , started in august but the shadows started to stay since the first of sept. with k6-7 up to 5-6 times daily. I was going nuts, Had my diagnoses of ch. Got 02 installed in my home and have imitrex injections when needed. One thing i can tell i am very very sensitive to medication so when i saw batch's vitamin D 3 regimen i jumped on the band wagon... my doctor asked to have my 25(oh) checked ,surprise surprise i was deficient. Since starting the regimen ( took about one week) i am on my 5 th day pain free , no shadows and k1 !!! So if i were you i would not hesitate one bit. Please read Batch's regimen. And good luck. Smiley
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Dan K.
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Re: Off the Verapamil and Lithium. Could use some help
Reply #6 - Sep 21st, 2015 at 1:24pm
 
Thanks for all of the replies. I felt it was necessary to give a detailed initial response so someone out there can best help me but, more importantly, so that perhaps I can help someone else. Of course every human body is different and will react as such to various treatments.

Regarding verapamil, again...it was the most effective preventative treatment for me for so long. I think the medical emergency arose from being off it for a few days then jumping back on to a super high prescribed dose while also taking a high dose of Magnesium. I did not have an extreme medical emergency from verapamil for 4 or 5 years while on it prior to the incident when the dosage was increased and for about 6 or 7 years after, once the dosage was leveled out. Still, I cannot defend this drug at high doses nor understate it's potential dangers. I have experienced this first hand. If you are curious, I was prescribed 960 mg daily (2 x 240 mg twice a day AM/PM).  I have felt faint with very low BP on numerous occasions on verapamil after the incident. There have been times where I thought I needed medical attention but usually some coffee and salt intake fixed the problem. It is important to recognize the potential dangers in combining it with another treatment that lowers BP such as Magnesium. Suffice to say it can be a very effective 1st line preventative but I feel that people MUST respect how dangerous it can be to be on a high dose of verapamil (the standard of care for prophylaxis of CH). I did get regular ECGs and EKGs and was still almost killed by a very high prescribed dose of the med. It was a one time event and, again, I continued it at a lower dose for years after without such serious issues. I guess my message for anyone considering it is that it can be quite effective but please proceed with caution.

That being said, I bought a bottle of D3 last night and took 10,000 IU. I also took Melatonin (not listed on the D3 regimen) earlier in the night, which I am convinced triggered CH. I did not take any of the additional supplements on the D3 regimen because I need to buy them. It is WAY too early to report anything but I am at least pretty sure that the D3 DID NOT cause additional CH last night though I cannot be positive because I took so many triptans to finally get to bed. WHAT IS INTERESTING is that I woke up and fell back asleep several times this morning. I am also sick with a bad cold, cough, and congestion which is never good for CH as you all may be well aware. Waking up and falling back asleep ALMOST ALWAYS triggers kip 6 + CH for me. After falling back asleep 4 or 5 times, I did not get hit with ONE CH. I want to be excited by this  Smiley but remain cautiously optimistic.

My body is signaling that I might be out of a severe cycle. Sometimes you just know, right? I reached for 10,000 IU of D3 nearly 2 hours ago and so far I feel pretty good (physically and mentally). This is a far cry from the 4 Kip 6 - 7 CH that I experienced last night. I will continue the D3 10,000 IU daily and add the supplements recommended by Batch's regimen. Does he get all the credit for this?  Wink

Again, it is WAY TOO EARLY to draw any conclusions but I think something happened here. It could have also been the melatonin (after triggering multiple painful CH last night that switched sides). It could also be that the cycle it taking a natural break. I will find out in time as I plan on dropping the melatonin and continuing the D3. I will add the other recommended supplements over the week. Lets see if I get rocked when I go to sleep tonight. That will be a real test.

Sorry for the lengthy post. It is my sincere intention to help you guys as much as possible while gaining valuable knowledge in return. You are my instant friends (brothers and sisters in pain?) because nobody else knows what living with CH is like. I can start a thread all about that but I won't because I have read so many of them already and it is plain to see that everyone on here understands the unique situation we face in all aspects of life.....I Really hope the D3 regimen is successful. Talk to you later.

- Dan
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Bob Johnson
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Re: Off the Verapamil and Lithium. Could use some help
Reply #7 - Sep 21st, 2015 at 3:02pm
 
It's unfortunate that you didn't come across this article which is regularly posted here.
========
J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.
SourceDépartement d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002 Nice Cedex, France. lanteri-minet.m@chu-nice.fr

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877±227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003±295 mg/day) were taking higher doses than those without EKG changes (800±143 mg/day), but doses were similar in patients with SAE (990±316 mg/day) and those with NSAE (1,011±309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID:21258839[PubMed]
=================

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Dan K.
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Re: Off the Verapamil and Lithium. Could use some help
Reply #8 - Sep 21st, 2015 at 6:23pm
 
Hi Bob. The literature really sums it up. My SAE from Verapamil was several years ago and I am fine now. Normal cadiac function. I did know the risks prior to taking verapamil but it is true, this article may have helped at the time.

Just to update, it has been an entire day on 10,000 IU D3 and I feel really good. I had a very minor shadow in the afternoon but it went away on its own in 10 minutes. I might take 5,000 to 10,000 IU of D3 later tonight. Anyone have opinions on this. It appears as though the D3 alone MAY have broke my cycle. Very interesting. I am almost afraid to add the other supplements in the Anti-Inflammatory regimen if the D3 alone will do the trick. I will continue monitoring this. Still cautiously optimistic.
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Re: Off the Verapamil and Lithium. Could use some help
Reply #9 - Sep 21st, 2015 at 10:38pm
 
Dan,

Don't be a wuss... take all the other supplements listed for this regimen at the suggested doses at the following link...  Scroll down, it's half-way through the first page.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I'd also suggest starting the vitamin D3 loading schedule taking 600,000 IU of vitamin D3 over a 10 day to 2 week period.  This will get your serum 25(OH)D up around 80 ng/mL, the target serum concentration for CH...

Take care and please keep us posted.

V/R, Batch
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