[Austin 2016 in Review (Please post your reviews here)]

This was my first cluster conference.  I was struck by the high quality of the presentation and the sense of fellowship that permeated the membership.  It was a wonderful mix of practical information advice for where technology is in dealing with this affliction and heart felt testimonials.  I was extremely impressed by the unselfish medical professionals that came and provided information which was insightful and applicable to daily life with the beast.  The session on how to talk to your doctor was one of the better presentations I've ever seen.  It was funny perceptive and right on the money.I hope everyone has a chance  to see this presentation and take at least mental notes when dealing with medical professionals. The "state of the art" presentations updating research and reporting was extremely high level and impressive. There are few folks who can truly appreciate how much work it takes to put together a research proposal or write a book about such a challenging subject.  The evening talk sessions were  first rate and truly helpful  in away I never would've anticipated.  I've had the opportunity to go to lots of meetings and presentations over the decades and this was a remarkable event.  I don't believe I was distracted or daydreaming during any of the presentations which in itself is extremely uncommon.   As with most gatherings of this type, the interactions "off line" during breaks, receptions and at dinner provides many of the most memorable experiences. It was truly awesome to interact with the rank and file and finally be among individuals who understand what it's like to deal with this problem.

 

The conference also emphasized the importance of community and the strength of group and encouraged me to become more actively involved lobbying for more attention from regulatory bodies, reimbursing entities and from our lawmakers.

 

This was an extremely organized on time event.  Eileen Brewer and her crew should be extremely proud.

 

Hopefully the information learned and the strategies shared will result in a prolonged remission.  It would be wonderful to attend this event with little fear of getting "hit"  because of strategies learned.

[Clusters and High blood pressure]

Your BP changes sound like a normal stress response and is physiologic.  If your BP is normal when your dont have an attack your numbers are not much to worry about.  Excedrin has caffeine and may explain the pulse and some BP changes.  When your blood pressure is elevated chronically there is a lot of vasoconstriction (narrowing of peripheral blood vessels.  Vasodilating drugs (at least those mediated by nitric oxide) are well know to precipitate an attack (ie ED drugs).  I'm not sure much has been described about blood pressure alone and cluster headaches.  Your baseline BP and pulse are pretty good so some of the vasoactive prophylactic meds (verapamil) might make you a bit lightheaded and dizzy.

[Conference takeaways?]

I posted on this two nights ago but either I goofed it up or it was yanked for reasons I don't understand.  I suspicion the former.  I found the conference to be extremely informative.  it was my first conference and coming off the most brutal cycle for me to date it was surprisingly helpful to be among individuals will actually understand.  It also made me strangely grateful that I am able to deal with this beast most of the time and able to work. Many are not quite as lucky and my support and heart goes out to them.

 

Other than the spirit of family and support that permeated the conference I am most impressed by the willingness to share valuable information and experiences in a self-help sort of way directed at finding a way to managing the beast. The presence of health care providers who have a true interested in treating this condition really warmed my heart. The physicians provided tangible evidence that folks are actively looking at ways of managing this condition. The advice on how to interact with your physician was invaluable. The research comparing psylocibin to placebo in an IRB approved study will prove to be invaluable and hopefully validate the experience of all the citizen scientists who paved the way for alternative treatments.I hope the work being done proves to be landmark research in traditional medicine. For a highly credentialed academic to engage in such a study is nothing short of courageous.

 

The work with electrical stimulation was also exciting and I will anxiously await the updates. Unfortunately I suspect the price point for such a device is given a be fairly formidable and there will be a lot of push back from third party reimbursement.  nevertheless it's exciting technology and if it works should also help understand what causing these problems.

[Just started taking verpamil and need help with dosage and]

First and foremost discuss with your Dr. dosing changes.  This is important for many reasons including knowing the big picture of your medical care, knowledge of your overall medical condition and a working list of other medications that might interact.  If your Dr doesnt have this or wont discuss these things consider another provider.  You need a relationship that is interactive in a positive way and you need to be prepared to communicate.  Writing down your goals (ie raising the med dose, starting O2 or adding a medication) for a visit along with recent blood pressure readings and current meds will go a long way towards expediting a visit.  Do not come to the visit with a "fix me" attitude because you will get a less thoughtful evaluation.  If your doc is any good they will appreciate your participation and help you facilitate your goals.  The verapamil dose your are reporting is relatively low so incrementally raising it is a consideration.  Many people need to get to 900-1200 if (and its a big if) its going to work at all during a cycle.  Preventative doses can be a bit lower. For most folks verapamil does cause much orthostasis (dizzy when standing) or impaired exercise tolerance but you certainly have to be vigilant about side effects.  Higher doses dis proportionally aggravate constipation which is distressing.  There is a lot of advise about alternative treatments which seem to be effective.  You should try to open with your doc about such things but carefully assess their attitudes first.  Also have a verbal agreement they wont be explicit in recording the info in your chart because confidentiality and privacy in the medical record is a thing of the past.  The record should be oblique using terms like "alternative" or "non traditional".  Since I utilize alternative methods my advice comes from experience.

 

And for goodness sake get a proper O2 set up

[Looking for testers]

I would be interested if I dont need to jailbreak my phone.  Iphone 6

[IT guy saying hello :)]

Thanks for all your help Alex. You quietly did a fantastic job. It's not easy to deal with individual computers, stream video and keep several mics in balance. Makes a big difference when someone knows what they are doing. I pray you have a smooth year and look forward to seeing you in Chicago

[New to CH, 36 weeks pregnant]

Imitrex was recently reassigned to category B risk in pregnancy.  It seems the placenta can handle just about anything vasoactive.

 

 

Category Risk Category A The safest drugs to take during pregnancy. No known adverse reactions. Category B No risks have been found in humans. Category C Not enough research has been done to determine if these drugs are safe. Category D Adverse reactions have been found in humans.

[New to CH, 36 weeks pregnant]

Sorry you are getting hit at what should be an exciting happy time. Too much to do getting ready for the blessed event. I didn't catch if this was your first pg but it sounds like it's your first cluster. Pregnancy is an evolving moving metabolic state and as your third trimester advances be sure to keep a close eye on your blood pressure. There's not Much data on trex in pg but it is largely regarded as safe. Birth defect issues are almost always a first 10 week thing. Now blood pressure is what needs monitoring. Spend time on your left side for a while after injection, that will optimize blood flow to the placenta. Remember BP in PG is usually lower so a high normal reading is abnormal in pregnancy. Your doctor knows this and will routinely monitor pressures over the next month. Trust and communicate with your doc

Usually PG is a state of vasodilation and pregnancy hormone levels are responsible for that which makes your situation worthy of close monitoring.

Steroids are completely safe in pregnancy and certain versions are routinely used in relatively high doses to promote fetal lung maturation. Again, monitor BP. Obviously staying in close contact with your doc will be important and you need to trust that person to help Shepard the pregnancy.

The O2 thing defines stupidity. Ask your doctor to print out the recommendations in an on line resource called up to date. O2 has level A evidence (the best) of being effective. Recruit one of the OB office nurses to help you crusade for coverage. If it moves too slow see if the hospital or ER has a system for making it available in house. Your doc could brief the ER about what's going on or make arrangements for you to get O2 as an outpatient in labor and delivery. Just make sure they know about high flow and non rebreather masks. Whatever it takes to at least give it a real try. Remember pregnancy changes your respiratory picture so breath deep and hyperventilate to clear the CO2. Persistence should win that battle and if your region is that backwards look around for a civilized part of the world. Sorry about the rant. But the whole thing pisses me off.

I strongly recommend avoiding all "alternative treatments" fetal brains are incredibly plastic and I suspect many of those molecules will cross the placenta and there is no telling the long term affects on the kid later in life. Studies show it doesn't take much of certain things to create subtle changes long term.

Your doc may have your see a Perinatologist (high risk pg sp;ecialist) for an opinion and that's ok. Second op;unions are good.

Vit D probably won't hurt but my guess you will clear it quickly in a hypermetabolic state and you don't have much time left before its time to welcome a new life into your world.

Good luck, stay positive, be persistent and remember to maintain a good sense of self. Things work out and establishing an inner calm is important.

[New bee to site]

Yup, sounds familiar and many share your experience. There are lots of good summaries on the board for nuances on treatment standards and not everyone responds the same way. Also the perception of effectiveness differs individually. Some folks feel anything but complete resolution is a fail while others are delighted with a decrease in duration, intensity or a lower threshold for things like oxygen or a lower dose of imitrex working. There is also a difference in treating while in cycle, busting a cycle or trying to prevent a cycle. Keep this in mind when browsing the repository of knowledge and experience here. Figure out your options, try them systematically and be flexible with what works. Educate yourself and direct your care as best able. Once you digest the info available in places like this you will be more familiar with option than most docs.

Anyway, to directly address your question. Growing is a bit art and a bit science stirred with lots of patience and perseverance. The best way to start is pfTek which uses canning jars and outlined in detail on this site. (I don't know how to link but it's relatively easy to find, the more senior members are very helpful with such shortcuts). The video "Let's Grow Mushrooms" is available online in several formats. Search the title plus roger rabbit and it should pop up. It takes more time than you would expect to get fruit but it you follow the directions success will come even if you get a fail once or twice.

I am sure better advice will follow this post but it's a starting point.

As an afterthought, It might be the barometric pressure changes not actual stress (Katrina) triggering you when I get to the southern coast and a front moves in I am toast in or out of cycle. Consider coming to Chicago next year. Just finished my first conference and it was extraordinary (coming from a cynical soul) plus it's beautiful in Chicago that time of year (mostly). Good luck

[Can alcohol prolong a cycle?]

I have had a similar experience.  Very long cycle this time for me this time (worst ever) finally killed it (or it ran its course).  Like you I was fearful of triggering another round but after a month without a hit I gave it a wine test and no hit.  Historically I never found alcohol to trigger a cycle but a random hit has occurred.  This last cycle was so long I have no idea when to expect the next cycle.  Going to bust every 3 months cause I'm not sure I could survive another session like the last one...getting too old.

[An unknown(?) treatment I'v found..]

It also fits somewhat with the idea the beast is modulated by the serotonergic nervous system.  There was some research at Johns Hopkins looking at trigeminal nerve stimulation (pain induction) and serotonin levels.  Of course anyone trying to slay the beast has a normal system in the first place so its hard to extrapolate how pain might mediate an attack.  Just don't hurt yourself there are enough scars as it is.

[Recent Updates on the Development of Ganetespib as a Hsp90 Inhibitor]

Looks like part of an abstract but unsure regarding implications for cluster folks

 

 

 

Biomolecules. 2015 Dec; 5(4): 2589–2618.

Published online 2015 Oct 16. doi:  10.3390/biom5042589

PMCID: PMC4693249

Hsp90: A New Player in DNA Repair?

Rosa Pennisi,1 Paolo Ascenzi,1,2 and Alessandra di Masi1,2,*

Thomas Helleday, Academic Editor, Wolf-Dietrich Heyer, Academic Editor, and Fumio Hanaoka, Academic Editor

[Should i use Sumatriptan or not?]

The experiences related here are similar to my own.  Last August 1 I started what turned out to be the most brutal cycle I ever experienced.  Early on it became refractory to oxygen and I was travelling a bit so oxygen wasnt always there anyway.  I had horded a significant amount of imitrex sq and prednisone and used it liberally.  In retrospect I think that combination extended my misery.  As we all Know this is a two edged sword trying to get relief while limiting exposure to treatments which can actually prolong the cycle (at least so it seems).  

 

Its always amazing to me how discombobulated treatment becomes in the throws of a bad cycle.  Even if one has access to oxygen, imitrex, verapamil, mm, steroids, energy drinks, vit D, magnesium, hydration, antihistamines, depakote, lithium, topomax etc when the beast hits and doesnt behave as expected treatment plans change and one can perpetuate the cycle and personal physiology in very negative ways while seeking even just a few hours sleep.  Sorry for the rant, we have all be there one way or another.  My point is it seems very difficult to approach cycles and individual attacks in a reproducible systematic fashion.  When the beast doesn't follow rules it makes it hard to develop a treatment strategy and is one of the reason doctors don't help too much.  Medical training isn't so good at treating moving targets especially for rare non lethal conditions.

 

That said, folks were talking about oral triptans and whether they are effective.  Personally I have found 50-100 mg of imitrex at night will get me some much needed sleep if I have a big day coming up.  Everything I read says it is not a prophylactic but my experience is strongly contrary.  There is a price to pay of course, rebound can be a problem and its easy to get toxic on the meds but at least I get through work the next day.  

 

There is a study looking at naratriptan (Amerge) as a prophylactic to break a cycle.  It is a long acting, long onset of action version of imitrex and the study showed some positive results using once or twice a day.  I tried it with my last cycle before it finally broke and plan to try it again if I break through my mm schedule.  Of course this med is more expensive and formulary restricted by some plans even though a generic is available.

 

The bottom line with this ramble is if all you got is oral triptan and you need some relief they can help just not in an acute attack.  Caffeine, fluids, exercise seem better in the throws of attack.  I wish prayer helped but it never has.

 

As always these are personal observations, opinions and thoughts. Each person is unique in resources and response.

[Is Prednisone making it worse? Please help :(]

80 mg of prednisone is a middle of the road dose for clusters.  Generally one seeks the lowest effective dose 60-100 mg a day) to pause the cycle and maintain it for a week or two while you increase the verapamil dose (which most probably will be constipating so use a laxative and stool softener).  

 

You will find the needed verapamil dose is going to be higher than you would think (up to 1200 mg for a short time in some instances)  and blood pressure needs to be monitored to avoid getting dizzy.  

 

Long term exposure to high dose steroids (months or years) have potential serious side effects which need to be monitored closely by someone familiar with managing high dose steroids.  The emotional toll of high dose steroids is also not insignificant and needs to be monitored usually by someone who is close enough to you to notice a mood change.

 

If you have been on prednisone at 60 mg a day for a couple of years your concerns are justified.  Short bursts of steroids like prednisone do not require a taper but if you have been on 80mg for most of 2 years weaning off might be a challenge and the guidance of an endocrinologist or rheumatologist knowledgeable in this is justified.  The prednisone can suppress normal communication between the adrenal gland and the brain and tapering off oral therapy has to be done in such a way to allow your own adrenals to start functioning normally.  Also if you have been on prednisone for a long time and then are under increased stress (surgery, injury or intense life event) you actually need a boost dose of a steroid to handle things physiologically.

 

Prednisone and verapamil can be helpful in busting a cycle but try and wean off as sensibly as possible using O2 as a abortive.  Once you are off roids, verapamil and other blockers for a week consider another trial of MM in the correct set and setting with a knowledgeable sitter.  Sometimes when you get wrapped up in a menagerie of modalities it takes a while to refocus and follow a disciplined path (which, of course, will always have detours)

[2016 Clusterbusters Conference]

I was trying to get hotel room and they claim to be full using CB link.  Is this others experience.  If full alternative suggestions?

Thanks