Jump to content

What have you tried?


Recommended Posts

I have, what may seem, a silly question, but I hope to do something kinda cool with the answers.

Would you mind listing all the things you've tried over the years to stop clusters regardless if it worked or not? If someone else has listed it, you don't need to list it again, I appreciate there will be several things on the list we've all tried.

I'll start:

Verapamil

Topirmate (Topomax)

Water, water and more water

Zomiltriptan

Indomethacin

Hot cloths

Cold cloths

Meditation

Stress management

Vitamin D3

Thanks

MG

Link to post
Share on other sites

I see much of what I've tried has been mentioned, so I'll just list things from my past cocktails, etc.  :D that I don't already see listed at first glance.

OK here's what I'm remembering right off the top of my clusterhead:

prednisone

sumatriptan

sansert (methysergide)

ergotamine

midrin

capsaicin (Zostrix) in nostril

O2

chiropractic

acupuncture

intravenous magnesium sulfate

Naproxen

wisdom teeth removal

deep breathing of freezing air

vigorous exercise

the Jeebs Jibulator  :D

energy drinks

Link to post
Share on other sites

The Jeebs Jibulator - now that's a new one that might require some explaining. Sounds interesting.

I'll let you into why I've asked for this information.

CHFather recently posted some very cool - honest - greeting cards aimed for people with cancer. I like those cards a lot, and they got me thinking.

What if we had a card we could give to people when they find out we have CH and are stirred with that desire to help by suggesting we try this and that. The most recent suggestions I've received are for meditation and healing crystals.

I'm running with the theory that if something doesn't work for most people with CH, it simply doesn't work on CH. I haven't tried acupuncture, and I don't intend to because I know several other CHers who have and it didn't help. So I figure the odds are very slim it'll work for me.

I'm picturing a greeting card with a brief description of what CH is, a list of all the things that have been tried to cure it and then some helpful tips on what the receiver of the card can do that will actually help. These basically being to be understanding, appreciate that CH can frequently interrupt any plans we had together and to not take it personally, and if you're ever with me when I have an attack, bring me water. That sort of thing.

The card is really a 'stop talking and get me a glass of water card', but said more politely.

MG

Link to post
Share on other sites

Reading this post is a walk down memory lane. 15 years trying all of Boston's neurologists(Until I found Mcgeeney). 

I will add:

1) Reiki

2) 4 vicodin /4 valium - Praying to pass out... In the end the valium became critical to the massive doses of Prednisone and my ability to not attack people while jacked up on it.

3) Head in snow bank

4) Close call with hammer to the front of the head...

Having people talk while I am having a CH is not an option.  If this is happening you need this card immediately and it needs to be short and sweet!  Shut up, get me water, and make it dark PLEASE!  the only water I drank with a CH was to wolf down pills that had zero effect.

Link to post
Share on other sites

Nice idea, MG.

Some others ones that some people have tried (sorry for any duplications):

ketamine (Ajax reminded me of this one)

sphenopalatine ganglion ablation

sphenopalatine nerve stimulation

microvascular decompression surgery

botox injections

deep brain stimulation

sinus surgery

TMJ treatments

occipital nerve block

hyperbaric oxygen

trigeminal rhizotomy

baclofen

methadone

nitrous oxide

octreotide

DHE (dihydroergotamine)

clonidine

sodium oxybate

sex

sodium valproate

dietary therapies

massage (Jeebs already listed chiropractic)

TENS stimulation

a whole bunch of topical creams and gadgets

a whole bunch of OTC pain medicines (Goody's is the one I always remember, but Excedrin migraine, etc., too)

I don't think anyone has listed energy drinks

Depressing as hell, isn't it?

Link to post
Share on other sites

Hmmm....  Truthfully all the busting agents that I have used have also at times been helpful for aborting a headache so I'll list them.  I put stars next to anything that seemed completely useless.

LSD

Psilocybin

DMT

Virola theiodora resin

Tetrahydroharmine

Harmine

Harmaline

Diplopterys cabrerana

Salvia Divinorum*

Mimosa Hostilis root bark*

N-Acetyl Cysteine

Ketamine

Adderall*

Testosterone*

MDMA

Nitrous Oxide

Oxygen*

Rivea Corymbosa seeds

Morning Glory seeds

Opium

Datura

Hash oil

hashish

Cannabis

Wild Dagga*

Carisoprodal

Tramadol

Indomethacin*

Vicodin

Vicoprofen

Morphine

I.V. Diphenhydramine

Dilaudid

Toradol*

I.V. Magnesium

Guarana

Coffee

Barbituates*

High dose ginger

I'm sure there is more that I am not remembering...

-Ricardo

Link to post
Share on other sites

I lost the list and lost count of all the drugs..prescription that is.

I include 02 in that list.

chiropractor( gave it to me free as he vowed it could cure me. However as bad as my headaches were. My back felt great)

Acupuncture

Nerve Blocks

Freezing in back of head.

Red Bull (puke), Coffee, high caffeine drinks.

Aleve 2 gel capsules per attack.

There is more but I have forgot so much over the years.

Brain Surgery #1 Occipital Nerve Stimulation

                   #2 Deep Brain Stimulation

                   #3 infection-DBS Removed

                   #4 re installation of DBS

At this point, all efforts had failed.  had tried ever known medication available to me here. Nothing worked.

I was suicidal for 2nd time...But in a much better head space 2nd time around....

Then I "Busted".....

Link to post
Share on other sites
CHFather, what are TMJ Treatments?

Mark is right about what TMJ is.  Not uncommon as a misdiagnosis.  Treatments include bite guards, physical therapy, various kinds of site injections, and even surgeries.

(This reminds me of another category of things that might not have been listed yet in response to your original question. I don't have the energy to go back and look.  Dietary things:  special diets (e.g. vegan, gluten-free) and of course drinking huge amounts of water.  Also, quitting smoking, quitting cannabis, trying cannabis . . .)

Link to post
Share on other sites

This is a partial list of the medications I have taken (since there is no way to remember them all) and the results

*Imitrex injections – Very effective at 4mg ( 6mg is too much ) I use an average of 3-8 injections per day

Imitrex pills – Not effective

Imitrex NS – Not effective

Frova – Not effective

Maxalt – Not effective

High-flow O2 – Never did work before until recently. May stop some attacks if applied quickly at 10-15 lpm or higher. Will not help for those attacks which wake me from sleep. Only worked approx twice out of dozen tries.

*DHE injections – Very effective ( temporarily; 24 hrs +/- )

*Solu Medrol 125mg +/ – Very effective ( temporarily; 24 – 48 hours )

Prednisone – Very effective at large doses ( 60, 80, 100 mg per day to start ) but with hefty side effects

Medrol Dose Pak – Very effective but also with hefty side effects

*Histamine infusions – Was very effective and still is the best thing I’ve tried to stop and prevent attacks. Rarely fails and most of the time it prevents attacks or keeps them manageable ( 1 attack per day and less intense attacks) for 3 weeks to 10 weeks. Helped for almost a year July 2009- July 2010 had very manageable attacks and was able to stay out of the hospitals for the most part. It was the best I have done in over a decade.

Lithium – Not effective ( I tried this several times, for an extended period of time, at doses up to 1050mg a day .. not sure why I say that dose cause I have 1200 mg in y head now) )

Verapamil – Not effective ( I could not tolerate large doses. 400mg a day proved to be too much causing dangerous decrease in heart rate. Heart rate dropped into the lower 20's )

Keppra – Intolerable side effects included severe nightmares. SPECTACULAR SIDE EFFECT CAUSING REAL PHOTOGRAPHIC MEMORY !! INCREDIBLE ! Wish I could've stayed on it even if it didn't help w/ the clusters !!

Topomax – Intolerable side effects included kidney stones twice; the first time requiring surgery.

Neurontin – Not effective

Lyrica – Not successful. Bad side effects

Lamictal – Not effective

Clomid – Not effective

Cell Cept – Not effective

Indomethacin – Not effective

Nimotop (BIGGEST PILL I EVER SAW) – Not effective

Doxepin – Not effective

Thorazine – Not effective; Intolerable side effects w/ large dose – SEVERE reaction; hallucinations, paranoia, psychosis (?)

Depakote & Depacon– Not effective ( I tried this for an extended period w/ Topomax. Dosage up to 1750mg a day)

Decadron & DexaPacks– Not effective

+ “ Mushrooms “ – Not effective for long at all. I did not follow thru with the 'protocol' which included a 2nd dose 5 days after the first dose. (No supply) I will be trying another route soon.

Occipital blocks (17 bi-lateral blocks) – first block stopped attacks for 17 days, all following blocks failed... Not effective

Sphenopaletine block – Not effective, made attacks worse

Facet block – Not effective

RFG – (Radio Frequency Generator) Not effective; attacks resumed within a couple of hours

Bi-lateral Occipital nerve stimulator TRIAL IMPLANT – Not effective; electricity did not ‘penetrate’ the skull and behind the eye. [Dr. Rogers from MHNI]. Dr. Todd Rozen & Dr Joel Saper

Sansert – Not effective; I tried this long ago for a couple of months. Won’t try it again because of the Imitrex restrictions while taking this drug.

Liquid Cocaine drops – Not effective; tried this at Diamond Headache Clinic one time; intolerable side effects (Lucid Dreaming). (Note: I’m sure that I tried a 4% solution without any success. I just read today that there is a 10% solution. Would this make any difference at stopping or preventing any attacks?). Also tried this more than a year later at home. Received one prescription and it was not successful at helping stop or reduce the cluster attacks. I reported this to Dr. Diamond as unsuccessful and that I did not want anymore. (This many about 70 yrs old swore by it  though. He said you must administer it correctly. <?>

Lexapro – Not effective

Hydrocodone & Oxycodone – Not effective (See below)

Methadone – Not effective

Actiq – Allergic ( severe itching on face and head at 600mg dose )

Stadol / Nubain (ALERGIC) / Morphine / Buprinex / Dilaudid (ALERGIC) / Demerol IV ( Not effective for full blown cluster attacks. Does help for smaller attacks in combination with meds like DHE or SoluMedrol or for attacks that are pain scale 7 or LESS )

Remeron – Not effective

Risperadol – Not effective

Melatonin – Not effective; Helped me sleep at first but quit working quickly. Dose up to 12mg at night

Diazapam – Not effective; Helped me sleep at first but quit working quickly. Dose up to 10mg at night

Baclofen – Not effective

Senequon / Doxepin 100mg at bedtime – Not effective

Droperidol / Anapseen (sp?) – Not effective; Changes EKG readings (affects T Waves. May cause a cardiac event ?)

Lortabs, Vicodin, Norco, Hydrocodone, etc ...

Percocet 10/325 mg

OXY IR 5mg (Up to 160mg per day along with TWO 100 mcgm Fentanyl patches for broken shoulders)

NUBAIN IV - SEVERE LIFE THREATENING REACTION; STOPPED BREATHING AND CLOSED MY THROAT !!

DALAUDID IV - SEVERE REACTION CAUSING URINARY RETENTION REQUIRING A CATHETER FOR DAYS, VERY UNCOMFORTABLE!!

REPEATED IV DOSES OF PHENEGREN CAUSES TARDIVE DISKENESIA, HAPPENED TWICE, ONCE FOR 2 DAYS AND ONCE FOR NEARLY 2 WEEKS!!!

Morphine Sulphate ER 30mg

Morphine Sulphate IR 30mg

Fentanyl Patches up to 200 mcgms (Have been doing 200 mcgms for over 15 months) ..UPDATE: I WEANED OFF THIS MEDICATION AND WILL NOT TRY IT AGAIN> TOO HARD TO STOP, BODY GETS TOO DEPENDANT ON THIS MED

Savella 200mg per day

Meperdine (Demerol) Tabs 100mg X 2 per day PRN Cluster attack, RX never refilled

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

This is what I remember anyways ....

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...