Need advice

[britbike]

Hey everyone,

I have been a lurker for several months...and I need some advice as I trust people that have this affliction to be upfront.

I recently discovered that I have CH (3 mo.)I have been taking Amerge, sumatriptan injections and tablets, O2 with limited success. Now my Dr. wants to put me on Lithium thinking that I maybe chronic. I asked about mushroom treatment but told "Don't do it!"

I am really worried about taking so much medication and the long/short term effects...I haven't started the Lithium yet and need some advice...should I try the shrooms or take the Lithium now and see what happens

Thanks for any advice,

Rod

[CHfather]

britbike, maybe you've seen this abstract, from 1984:  http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1981.hed2104132.x/abstract

>>>>Nineteen male patients aged 26 to 67 years have been treated with lithium sulphate in the form of slow release tablets (Lithionit® Durules®) to prevent attacks of cluster headache. Treatment was given to a serum concentration between 0.7 and 1.2 mmolI. Eight of the patients had chronic symptoms and in all of them the treatment resulted in immediate partial remission of their headaches. The average headache index improved within 2 weeks by 85.3 per cent (75–100%). Three patients were treated for between 18 and 36 months. In one of them the treatment was still effective after 2 years, while the other two appeared in due course to become tolerant to the effects of the drug. Both of them, however, had long periods of remission after interruption of treatment, which may indicate that lithium alters the natural course of the disease in chronic cases.

In 7 patients with periodic symptoms lithium had only a slight or no effect on the headaches. In four other cases lithium was given for, on average, 19.7 months (6-31), principally owing to psychiatric symptoms. This long-term prophylactic treatment resulted in an almost complete suppression of cluster periods. Two of these patients tried to discontinue the drug after one year. This produced extremely severe rebound headaches after 3 weeks.

It is concluded that lithium is efficacious in chronic cluster headache. Lithium has only slight effects in acute periods of cluster headache but may prevent them in some patients when the drug is given in a free interval between two periods. In view of its potential serious side-effects, lithium should be given with caution to strictly selected patients.<<<<<

So, if you're chronic, maybe this is something you'd want to try.  Does your doc have good reason for thinking you might be chronic?  The side effects of lithium can be quite unpleasant, as this says, and then there's the tolerance and the "extremely severe rebound headaches," and having to have your blood tested regularly.

Could be that more is now known about lithium, positive and negative, since that old report.  I researched it when two neuros recommended lithium to my daughter within the past year, and I pretty much stopped here, since busting seemed to be -- and I believe was -- a whole lot better choice.

If you've been lurking, then you can't have missed my broken-record recommendation of the D3 protocol.  If you have missed it, or if you'd like me to repeat it, let me know.  Also, if you're having only limited success with oxygen, you could try the higher-flow method, and/or perhaps more sophisticated equipment (demand valve; O2ptimask).  These things can be very important to get you to the place where you can use the shrooms, if you choose to.

I understand it's a tough decision -- something that could help, but with possible/likely significant side-effects and long-term reduction in efficacy (or even severe rebound headaches).  And of course, to get to the shrooms you have to detox from meds that are probably helping you.  So I'm just providing this as information (which, to say it again, might be outdated).

[Bejeeber]

What CHfather said. Exactly. 

Yep if you haven't tried the high flow non-rebreather O2 (much more effective than how doctors ordinarily prescribe it), it could become a critical abortive for you, and along with the D3 could enable you to detox from the drugs.

The high LPM O2 absolutely works for a very high percentage of us. The D3 I'm not sure how high a percentage because it's relatively new, but I think it's very worth trying because we're seeing more and more CH'ers - including chronics - reporting going into remission with it's use.

My opinion as someone with a 30+ year history with episodic CH that has included a zillion prescriptions is that mushrooms are a much better long term solution than drugs including lithium, but you might as well find out what happens with the O2 and D3 first, then take it from there.

Oh yeah, and more often than not doctors are completely clueless a-holes when it comes to CH. I've learned to never trust one as far as I could throw one.

[Psiloscribe]

So far, the odds are that you are not chronic. It takes a year to know for sure. Lithium can help chronics but is mostly useless for episodics.

One problem starting lithium now is that that if your cycle ends sometime soon, (even on its own) you may end up being on Lithium much longer than you need to be.

Just flat out asking doctors about if you should use mushrooms will almost certainly get you an answer of no.

Even from ones that support it.

Check out our files section and find some of the reports, research papers etc and bring them in and just ask for an opinion. More often than not the opinion is: Its all very interesting and may work well for you. it all makes sense since they are in the ergot-triptan family. But I can't recommend that you use them"

Bob

[ThatHurtsMyHead]

Rod,

I'll give it to you straight up...  I saw doctors for 15 years that gave me everything from antibiotics, to Verapamil, to Imitrex, to ....  to....  NOTHING worked 1/2 as good and had TONS of awful side effects, as these two items:

1)  Oxygen

2)  Hallucinogens (low dose)

I've learned over the years about how doctors operate and am somewhat bitter that many know how effective Oxygen and shrooms are, but they refuse to do anything that really helps their patients.  Doctors today only know how 'try' one drug company cure after the next instead of helping with something that really works:

Oxygen and Shrooms:

1) Doctors can't make money off of repeat trips to see them for more drugs, or adjustments to the doses.  (or even more drugs to combat the side effects of the first drugs they gave you).

2) They don't make the drug companies rich, which in turn give kickbacks and perks to the doctors.

Since starting alternative treatments discussed on this website:

I now only see my doctor for 1 visit a year to update my oxygen prescription.  Other than that I don't need to see him OR put any of the drug companies crap in my body.  (and trust me side effects from Verapamil and other drugs I've taken from them were FAR worse than anything natural I've taken  (seeds, shrooms etc)

From my experience with the halucinogen treatments, I'm perfectly fine the next day with no issues, side effects, nothing.  Just normal - well accept no CH attacks!!

Lithium you would have to take every day and here's a list of side effects I just looked up:

Lithium Side Effects - for the Professional

LithiumThe occurrence and severity of adverse reactions are generally directly related to serum Lithium concentrations as well as to individual patient sensitivity to Lithium, and generally occur more frequently and with greater severity at higher concentrations.

Adverse reactions may be encountered at serum Lithium levels below 1.5 mEq/L. Mild to moderate adverse reactions may occur at levels from 1.5 to 2.5 mEq/L, and moderate to severe reactions may be seen at levels of 2.0 mEq/L and above.

Fine hand tremor, polyuna and mild thirst may occur during initial therapy for the acute manic phase, and may persist throughout treatment. Transient and mild nausea and general discomfort may also appear during the first few days of Lithium administration.

These side effects usually subside with continued treatment or a temporary reduction or cessation of dosage. If persistent, cessation of Lithium therapy may be required.

Diarrhea, vomiting, drowsiness, muscular weakness and lack of coordination may be early signs of Lithium intoxication, and can occur at Lithium levels below 2.0 mEq/L. At higher levels, ataxia, giddiness, tinnitus, blurred vision and a large output of dilute urine may be seen. Serum Lithium levels above 3.0 mEq/L may produce a complex clinical picture, involving multiple organs and organ systems. Serum Lithium levels should not be permitted to exceed 2.0 mEq/L during the acute treatment phase.

The following reactions have been reported and appear to be related to serum Lithium levels, including levels within the therapeutic range:

Neuromuscular/Central Nervous System - tremor, muscle hyperirritability (fasciculations, twitching, clonic movements of whole limbs), hypertonicity, ataxia, choreoathetotic movements, hyperactive deep tendon reflex, extrapyramidal symptoms including acute dystonia, cogwheel rigidity, blackout spells, epileptiform seizures, slurred speech, dizziness, vertigo, downbeat nystagmus, incontinence of urine or feces, somnolence, psychomotor retardation, restlessness, confusion, stupor, coma, tongue movements, tics, tinnitus; hallucinations, poor memory, slowed intellectual functioning, startled response, worsening of organic brain syndromes, myasthenia gravis (rarely);

Cardiovascular – cardiac arrhythmia, hypotension, peripheral circulatory collapse, bradycardia, sinus node dysfunction with severe bradycardia (which may result in syncope);

Gastrointestinal - anorexia, nausea, vomiting, diarrhea, gastritis, salivary gland swelling, abdominal pain, excessive salivation, flatulence, indigestion;

Genitourinary - glycosuria, decreased creatinine clearance, albuminuria, oliguria, and symptoms of nephrogenic diabetes insipidus including polyuria, thirst and polydipsia;

Dermatologic - drying and thinning of hair, alopecia, anesthesia of skin, acne, chronic folliculitis, xerosis cutis, psoriasis or its exacerbation, generalized pruritus with or without, rash, cutaneous ulcers, angioedema;

Autonomic - blurred vision, dry mouth, impotence/sexual dysfunction;

Thyroid Abnormalities - euthyroid goiter and/or hypothyroidism (including myxedema) accompanied by lower T3 and T4. I131 uptake may be elevated. Paradoxically, rare cases of hyperthyroidism have been reported;

EEG Changes - diffuse slowing, widening of the frequency spectrum, potentiation and disorganization of background rhythm;

EKG Changes -reversible flattening, isoelectricity or inversion of T-waves;

Miscellaneous - fatigue, lethargy, transient scotomata, exophthalmos, dehydration, weight loss, leukocytosis, headache, transient hyperglycemia, hypercalcemia, hyperparathyroidism, excessive weight gain, edematous swelling of ankles or wrists, metallic taste, dysgeusia/taste distortion, salty taste, thirst, swollen lips, tightness in chest, swollen and/or painful joints, fever, polyarthralgia, dental caries.

Some reports of nephrogenic diabetes insipidus, hyperparathyroidism and hypothyroidism which persist after Lithium discontinuation have been received.

A few reports have been received of the development of painful discoloration of fingers and toes and coldness of the extremities within one day of the starting of treatment with Lithium. The mechanism through which these symptoms (resembling Raynaud's syndrome) developed is not known. Recovery followed discontinuance.

Cases of pseudotumor cerebri (increased intracranial pressure and papilledema) have been reported with Lithium use. If undetected, this condition may result in enlargement of the blind spot, constriction of visual fields and eventual blindness due to optic atrophy. Lithium should be discontinued, if clinically possible, if this syndrome occurs.

Good luck on your decision, 

Jeff

[britbike]

Thanks for the replies...

I have had several bouts of CH in the past 5 years but never new what it was...I spent several thousand dollars on dental work (5 root canals on the same tooth) thinking that was the problem..eye exams, etc before finding out what was wrong.

I have been having shadows (4-6 per day) and all out CH (2 per day) so regular that I didn't need a watch. My insurance company has limited me to 4 CH per month...I keep telling the beast that but he will not listen.

I have grown weary of begging for medication or trying to pay for it myself...And shrooms appears to be my only option unless I agree with my Dr and start Lithium...

After reading many post and replies, I started to try and "detox" from my present medication of Amerge and Sumatriptan...but I was slapped down by the beast. I am having a difficult time trying to get to a place where I can try the shrooms with a reasonable chance of success...

What is the minimum time to clear Amerge and sumatriptan from my system...I have learned to use O2 at the first signs of a shadow with more success but I don't always have O2 at my side. Can I take ANY medication during this "detox" period and still expect some success.

Thanks for all the help...I need it

Rod

[Bejeeber]

Hi Rod,

I've heard some say that busting can be possible while on verapamil, but I'm not an expert on that, not recommending it, just kinda trying to bring it up as a discussion point here. Of course what I'd really hope (but not go so far as to assume) is that you could get some prevention with the D3, and I'll just add that personally I'm going for 15,000 IU per day, which I think is reasonable.

I'm going to quote the eminently quotable CHfather right now, because the D3 protocol sounds like a no brainer (or a no pain brainer? ) for you to try:

"I'd urge you to consider beginning right now the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly.  Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. You can find these ingredients in a pharmacy or drug store.  Many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness.  Many people start getting significant relief within a day or two.  The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  To read a great deal more about the D3 regimen, you could wade through the following thread:" http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

[weatherman]

Hey Rod,

I've been on Lithium a few months, and my opinoin is that it works "sort of well".

After being diagnosed Chronic CH about a year ago, my Primary doctor quickly gave me O2.  I bought my own 15 lpm regulator and an Optimask.  It was a tremendous improvement over the K8-9 headaches I was having almost every day.  Occurrance of CH went down to 4-6 times a week and pain levels were much lower, K5-7.  I can't recommend it enough.  GET IT !!!

I was referred to a Neuro several months ago and Lithium Carbonate was prescribed.  I reluctantly tried it, knowing the history behind its use in the Medical community.  I was started on one pill per day (300 mg) for one week, then two per day, their recommended treatment.

After the first week, the CH occurrance and intensity decreased only slightly.  After the second week of 600 mg/day .... I was a freakin Zombie !!  I mean total disconnect of mind and body from reality.  I couldn't work, drive or have any kind of higher-level brain function.  My wife thought I had Alzheimers Disease.  I just didn't care anymore.  To say I was lethargic is an under-statement.

So, I immediately cut back to 300 mg/day (one pill) taken just before bedtime.  They are quick-release pills and I think the timing is right for the evenings.  2-3am was always the worst time for me.  I've been on this dose for two months.

Since then, I have not been woken up in the middle of the night once with CH.  The occurrances are down to 2-4 times per week (always in the early afternoon) with Pain Levels K=4-6.  O2 quickly erodes the CH if I can catch it soon.

Never had any of the classid symptoms of Lithium;  tremors, thirst, nausea, etc.... but the lethargy kicked my butt and hit me like a ton-of-bricks.  I'd say give it a try .... but start out slow.  I plan on quitting the Lithium soon and want to give my best shot at RC Seeds.  Funny, I ordered them and they arrived exactly the same day I saw the Neuro.  I'd love to try the Shrooms but don't have the resourses to locate or grow them. 

Best of luck my friend ......

Brad

[Brew]

The short answer to "should I take shrooms" is "Not yet!"

Not until all those other meds are out of your system for a minimum of 5 days. You'll need to tough it out for at least this long using nothing but O2, energy drinks and ice packs. Some have reported success busting while on verapamil, but if you're going to detox, why not go all the way?

Those 5 days can be hell. And then the next 5 days can be hell. And the next. And the next. Because busting has a tendency to stir things up in the brain. But you need to stay med free in order for the next bust to work.

It wasn't pretty, but you can use me as an example. I detoxed, busted, busted again 5 days later, ad nauseum for a few months. But each time it came back with less and less cojones. Then I was able to stretch out the time between busts. A week. Two weeks. Now I bust every six months or so, whether I feel I need it or not. Just to be safe.

All my time in between is spent pain free. The entire time it took me to get to this point was about 5 months. And I'm convinced if I had really known what I was doing, it would have taken only half that time. That's the unfortunate thing about busting - almost every one of us is in a really bad place when we start.

I will never - NEVER - go back to mainstream meds for this affliction.

[CHfather]

want to give my best shot at RC Seeds.Funny, I ordered them and they arrived exactly the same day I saw the Neuro. I'd love to try the Shrooms but don't have the resources to locate or grow them.

Brad, thanks for joining in with this personal experience, which I have seen with others on 600 mg/day of lithium.  I just wanted to comment on your remark about RC.  It's important for people to know that RC is not any kind of second-class treatment for CH.  RC works great for lots and lots of people, just as shrooms do.  Bob Wold, who knows as much about this as anyone anywhere, has said the LSA might even be preferable to psilo as a CH treatment.  The "problem" with RC is that because the LSA content of seeds varies, it's hard/impossible to precisely calibrate dosages.  But, really, people take pretty high dosages (60 to even 100 seeds) without significant side-effects, whether those side-effects are psychedelic or internal (stomach upset, etc.).  So the only real issue is to take enough to be sure you're overcoming the effects of any low-LSA seeds and getting enough LSA in the total dose.  I'm not recommending 60-100 seeds as a first dose or even necessarily as a later dose --we've had people here knock out their HAs with doses as low as 11 and 15 seeds--just saying that RC is fully effectively for most people, as long as they're not getting too little LSA when they use the seeds.