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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> CH husband has a question
        
(Message started by: YYZBlonde on Sep 16^th, 2004, 10:40am)

Title: CH husband has a question
Post by YYZBlonde on Sep 16^th, 2004, 10:40am

Hello Everyone!

My husband asked me to post this on his behalf. He is so tired and we are both desperate. Your thoughts and ideas are very much appreciated!

[i]Have had clusters about 22 years, avg duration 4 mos, at peak, pain up to 24 hrs a day. Avg between cycles, 2 years. Most recently, got hit 8/13, day before vacation. Went to neuro on return. Got 3 shots of nerve block (steroid and novacaine). Pain broke through. Went back to doc and got 5 more nerve blocks at various points.Taking Verapamil 240 x 3/day (both for BP and HA), take Hyzaar (BP), take Toprol (BP). Neuro proscribed Prednisone, 20mg x 3/day. Last Friday, as if all of the nerve block dams had broke, I had about 8 headaches lasting all night. Then, at 5am decided to try shrooms (first time). Seemed to turn off the cluster, but still had "surface pain". Slept good Sat. but Sunday, they came back. Have had headaches (afternoon/night time) through yesterday. Felt that I probably underdosed on Sat, so took shrooms again yesterday @ 4:00 as cluster was starting. Got the FULL effect, visuals, numbskull, etc. But after about 4 hours, began sensing the pain. Thought, OK, it's just surface pain. However, after another hour, became clear that it is cluster (STILL!!!). Kept ice on head and finally subsided at 1:00 am, but slept with ice pack on under hat. Dr. is taking me off prednisone today and starting Lithium tonight. He feels that my headaches are particularly problematic. He is sending me to maxiofacial phys therapist doc. There must be some link between spine--my back muscles are tight and seems the spasm begins there. But the short question is: If I took a high enough dose of shrooms, how can it be possible to have the headaches? I'm confused, and extremely tired.[/i]

Title: Re: CH husband has a question
Post by Tom K on Sep 16^th, 2004, 10:50am

I can't answer the shrooms question but I can tell you that the phys therp doc won't work. Have your neuro get O2, Trex NS or Injections. That will help you more than phys therp. Where did he do the nerve blocks? I just got one in the back of the head and am pretty well off. I have had 3 K5+ and 1 K2 in the last 36 hours. Should have had about 9 or more. Don't know if they cut down the number of attacks or lessen their pain. For me it is a little of both. Hope you find relief soon.

T

Title: Re: CH husband has a question
Post by karma on Sep 16^th, 2004, 12:45pm

You should probably do a search here about that treatment to get educated about the proper use and dosing. From what I read, the treatment works best after you have been med free for about five days and then a second dose may be required after a couple days.
O2 seems to work magic for allot of people. I may be wrong but you can probably use the O2 when need to abort during the med free period.

Title: Re: CH husband has a question
Post by YYZBlonde on Sep 16^th, 2004, 1:22pm

Ahh......I will tell him that no meds is the best way to get the proper effect. That's tough. The nerve blocks were done temple, back of head(both sides), top of head(scalp) because it was sensitive, and behind ear. Our neuor gets ch too. He is always willing to try anything and I'm certain he's tried everything on himself. Now we attempt litium. Sansert is our other hope but getting it here from Canada is a long process. The nerve blocks work well with my chronic dailies and migraines but I can't figure out why this time absolutely nothing is working so far. Frustrating really. Thanks for your imput!

Title: Re: CH husband has a question
Post by Margi on Sep 16^th, 2004, 1:43pm

:o !!!

VERY important that he not try shrooms until he is med free!! He's playing with FIRE! No wonder he's things have gotten worse. Not only with taking them while he's on meds, but just look at all the meds he's been on in the last month!

I doubt even five days is enough of a detox - but check out the clusterbusters website for their opinion on it. www.clusterbusters.com

He's probably just completely reset his seratonin levels to a point that they are completely out of control now. Even med free - you are supposed to wait five days between dosing with shrooms!

Do your research folks - playing with this kinda stuff (mixing meds, alternative treatments) can (obviously) make everything worse and you are taking SUCH a huge risk. No more shrooms untils he's completely off all the meds!

Title: Re: CH husband has a question
Post by YYZBlonde on Sep 16^th, 2004, 1:46pm

Ok...more follow up.

1. Hubby has H tank sucking on 10-12lpms to abort headache. If caught early enough is sometimes effective but he's used about 1/4 of the tank in the last few days.

2. Going completely off of all meds is out of question due to his serious high blood pressure(180/120 on meds). Can't risk one thing for another.

3. Biggest hope is the sansert and lithium....any luck with lithium??

4. Curious if nerve block should be tried again or shroom???

Thanks for your thoughts Tom K and Karma!!!!!

Title: Re: CH husband has a question
Post by Karla on Sep 16^th, 2004, 2:28pm

ch will make your back and neck muscles tighten up and be a mess. My dr /neuro was convinced it was the tight mucels causing my ha inititally. I was sent to physical therapy and after much masaging I was able to prove that the tightness was an effect of ch not a cause of ch. It will just convince the dr that that is not the plroblem.

Title: Re: CH husband has a question
Post by Kris_in_SJ on Sep 16^th, 2004, 9:15pm

Hi,

You should definitely visit clusterbusters.com regarding the shroom thing. To my knowledge, the B/P meds should not interfere, but there should definitely be no Triptans in his system when he doses with shrooms.

There are many here more knowledgeable. Search the archives for "shrooms" and PM someone. Also, research the site already mentioned.

So sorry you're hubby is suffering. I've read here that Lithium helps many - don't be afraid to try it.

Many Hugs,

Kris

Title: Re: CH husband has a question
Post by Giovanni on Sep 16^th, 2004, 9:52pm

Steriods are a definite no no with the shroom therapy.

John

Title: Re: CH husband has a question
Post by eyes_afire on Sep 16^th, 2004, 10:36pm

I can only add this: be careful with mixing shrooms and lithium (meaning: don't do it). Lithium is known to intensify the psychedelic effects. You don't want to induce a bad trip. Also, when I was dosing, I noticed no benefit to taking excessively large doses (and I took some rather large doses). 180/120 on meds? :o Then you should probably not be doing higher doses, as shrooms may elevate blood pressure (maybe you shouldn't be doing shrooms at all [smiley=huh.gif]). I don't know. Just be very careful... you're not the typical Shroomhead Clusterhead (meaning: you're probably in uncharted territory). Sorry, I'm just saying this out of concern.

--- Steve

Title: Re: CH husband has a question
Post by TxBasslady on Sep 17^th, 2004, 1:25am

LISTEN VERY CAREFULLY TO STEVE, MARGI AND JOHN!!!!!!

Not good to be mixing these drugs together!!!!!

Sounds like the body is in complete turmoil. We're not dr's.......but some folks here have had near death experiences trying to mix and match.

Definitely get hold of someone w/Clusterbusters, if he is insistant on dosing. There is a proper procedure, and if followed......his results may be very good.

Good luck to you and your hubby......hope you both get some good answers and much needed rest.

PF vibes,

Jean

Title: Re: CH husband has a question
Post by FZfan on Sep 17^th, 2004, 8:16am

One possible way to get med-free in preparation for shroom therapy, is to drop all meds but use oxygen to abort the attacks during the time it takes to detox. Even if it takes longer than 5 days, this can still be an effective strategy.

You mentioned that oxygen was somewhat effective but that you went through 1/4 tank in a few days. Are you talking about an "E" tank? If so, your hubby is not using enough oxygen. Believe it or not, when in cycle I will go through an E tank every other day, and I only get 2-3 attacks per day! During cycle, I keep two E tanks in the house, so that when one goes empty I have a backup.

Be sure your hubby is using a high flow regulator and a NON-REBREATHER mask. Please read the oxygen link on the menu to the left for details. High flow rate o2 needs to be breathed for anywhere from 10 to 20 minutes to be effective.

Oxygen can be a great abortive but it has to be used correctly or it will be less than effective.

I would also echo what others have said, get help from clusterbusters regarding the shrooms. There is a set procedure for getting help from them and your husband is not following it.

Good luck in your battles with the beast.

Title: Re: CH husband has a question
Post by kimh on Sep 18^th, 2004, 9:47am

So sorry your husband is having such a bad time!!!

Since he needs to stay on the meds, shrooms is not an option at this time for him. The above posts are DEAD ON!!!

Ask the doc about trying the lithium in conjunction with the Verapimil. Many here have had success with that combo. Right now is the toughest time because the headaches are ramped up and finding effective preventative will seem like a needle in a haystack.

Keep at the oxygen - not sure if you are using the non-rebreather mask...or what settings you are using. That can make a huge difference in effectiveness.

Best luck and PFDAN***

Title: Re: CH husband has a question
Post by bean on Sep 21^st, 2004, 7:16pm

on 09/16/04 at 13:22:50, YYZBlonde wrote:

Our neuor gets ch too. He is always willing to try anything and I'm certain he's tried everything on himself. !

DON'T EATS:

1. Chocolate

2. Soy Sauce- Miso, Tamari, Shoyu, etc.

3. MSG- this stuff is everywhere, you have to read the labels on EVERYTHING. But once you get the hang of it, it's not so hard. Canned soups, packaged soups, chips, fish sticks, frozen dinners, etc. Basically anything with flavor added. But once you get the hang of it, it becomes routine and you know which brands to buy.
Plus ask the pizza parlor you get pizza from if it's in the sauce.

4. Cigarrettes- fuck healthy, that's another site. This is about cluster headaches, and even being in the same room as someone who smokes will make me have one. Mabye not instantly, but within a few days. His choice.
It's not just me, either. There have been posts here where someone who worked in a bar quit, and their headaches were reduced in intensity.

5. Alcohol- wine, beer, hard stuff, everything.

6. Aged cheese- Bleu, gorgonzola, parmegon, etc. Even american to a lesser extent. And the parmegon in the states is not the real stuff, but I've found it to be better to only eat it once in a while.

7. Coffee

8. Soft drinks with caffiene- I don't know if it's the brown coloring or the caffiene, or both, 'cause a Mountain Dew gave me a HA one time, but pop is out.

9. Saurkraut, pickles- have noticed they will give me shadows.

10. Vegemite, marmite- only valid in UK or Australia.

I think this is a pretty complete list.

Tell your neuro to try this. :]