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(Message started by: shinydellgirl on Oct 11^th, 2003, 4:41pm)

Title: My 1st Post
Post by shinydellgirl on Oct 11^th, 2003, 4:41pm

My husband was diagnosed last week with CH. About a year ago he started having severe headaches that woke him up. We assumed they were stress and they went away for a while. They started up again this fall. I started reading on Web MD and read how CH can wake you up and I was struck by the similarity but didn't read much more than that. The headaches started coming more frequently and my husband began to tell me more about his pain. One night he was begging me to take him to ER and telling me about the pain in his eye. We never made it to the ER. He couldn't help me get his clothes on and after about 30 minutes the headache went away. At that point I hadn't read about the eye pain and we just assumed it was eye stress and were planning on making an eye appt. I started reading more and found out about the eye symptoms. I couldn't believe what I was reading. I asked my husband to read it and we were both convinced he had CH. His CT scan was clear and he was referred to a neuro. In fact, his neuro is listed on the OUCH website. What luck! The doc prescribed O2, Imitrex Nasal Spray, and Bellamine S as a prevenative. I haven't heard anyone mention Bellamine S. Has anyone used it? The O2 aborted the attack the 1st time he used it. The second time he needed to back the O2 up with the Imitrex. It stopped in about 30 minutes. He just started the Bellamine yesterday, so we don't know how that's going to work. I am so happy I found this site, but sorry to see that there are so many who suffer from this. Looking forward to talking with you all.

Shinydellgirl
aka Lee Ann

Title: Re: My 1st Post
Post by Dave_Emond on Oct 11^th, 2003, 5:30pm

Sorry to have to welcome you aboard Lee Ann,
But stick around, we've become a family in here, both CH sufferers and supporters. As with your husband, most of us also had to wait a long time before being diagnosed with CH.
Don't know about Bellamine, but keep watching. someone will and they will respond.
There are many supporters of loved ones who suffer from CH in here, and they are very knowledgeable, compassionate and experienced in ways to help both you and your husband find coping methods to deal with the CH. You can vent, cry, question or you can share, support, and even find laughter among this family.
Keep us updated on your husband, I'm even kind of anxious to hear more about this Bellamine and if you see any relief.
Sorry you have reason to be here, but hope you'll stick around, you'll learn more here than anywhere else, because we all know exactly how CH affects our lives and yours.
Dave

Title: Re: My 1st Post
Post by ShariRae on Oct 11^th, 2003, 5:38pm

Hi Lee Ann..
Welcome aboard...as Dave said..there are lots of great folks here,both sufferers and supporters. Feel free to ask questions and read all you can here. There is tons of information. Just click on any of the buttons on the left. I too am curious to hear how hubby does on the Bellamine S as I am not familiar with it at all. Please keep us posted.
Huggs
Shari

Title: Re: My 1st Post
Post by Jackie on Oct 11^th, 2003, 5:48pm

Hi Lee Ann and welcome........
Sorry you and your hubby have the need to be here but since you do this is the best place for help, support and information. My hubby, Blake, is a CH sufferer and I've often wondered where we would be without this site and the wonderful family here at ch.com.
There is also a board for supports. Please feel free to post there too.
My best advice is to study and read...here and on the OUCH site (button on the left). Knowledge is power and your very best line of defense when dealing with this malady.

Good luck,
Jacks 8)

Title: Re: My 1st Post
Post by Chia on Oct 11^th, 2003, 5:51pm

Hi Lee Ann, Welcome to our Family ::) !!!! I have to laugh because my husband Charlie M. (there are 2 Charlies here ;D) and I are also quite new. Charlie has been having Clusters for many years and until we found this web site we never knew his headaches had a name. The people here have been a "God Send" for us. We have learned so much by reading everything in here and asking questions ???...I truely feel what you & your husband are going through...Its a nightmare at times but I can't give up, for Charlies sake.So hang in there and read all that you can and ask questions.....Chia

Title: Re: My 1st Post
Post by Lori on Oct 11^th, 2003, 8:28pm

I too am sorry you all have a need to be here, but this is the place to be if you have CH. Let us know how the Bellamine works for your husband. The following is what I found on RX.com
Maybe someone else here can comment on how this has worked for them.

Bellamine S
GENERIC NAME: ERGOTAMINE (er-GOT-a-meen) BELLADONNA ALKALOIDS (bell-a-DON-a AL-ka-loids) and PHENOBARBITAL (fee-noe-BAR-bi-tal)
BEFORE USING THIS MEDICINE
IMPORTANT NOTE: THE FOLLOWING INFORMATION IS INTENDED TO SUPPLEMENT, NOT SUBSTITUTE FOR, THE EXPERTISE AND JUDGMENT OF YOUR PHYSICIAN, PHARMACIST OR OTHER HEALTHCARE PROFESSIONAL. IT SHOULD NOT BE CONSTRUED TO INDICATE THAT USE OF THE DRUG IS SAFE, APPROPRIATE, OR EFFECTIVE FOR YOU. CONSULT YOUR HEALTHCARE PROFESSIONAL BEFORE USING THIS DRUG.

COMMON USES: This medicine is an ergot alkaloid, anticholinergic, and antispasmodic combination used to treat hot flushes, sweating, dizzy spells, restlessness, and headaches associated with menopause and other conditions as determined by your doctor.

HOW TO USE THIS MEDICINE: Follow the directions for using this medicine provided by your doctor. DO NOT use daily on a regular basis. AVOID EATING GRAPEFRUIT OR DRINKING GRAPEFRUIT JUICE while taking this medicine. STORE THIS MEDICINE at room temperature in a tightly-closed container, away from heat and light. IF YOU MISS A DOSE OF THIS MEDICINE, take it as soon as possible. If it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule.
CAUTIONS: IF YOUR SYMPTOMS DO NOT IMPROVE or if they become worse, check with your doctor. THIS MEDICINE MAY CAUSE drowsiness. Do not drive, operate machinery, or do anything else that could be dangerous until you know how you react to this medicine. THIS MEDICINE WILL ADD TO THE EFFECTS of alcohol and other depressants. Ask your pharmacist if you have questions about which medicines are depressants. DO NOT EXCEED THE RECOMMENDED DOSE or take this medicine for longer than prescribed without checking with your doctor. Exceeding the recommended dose or taking this medicine for longer than prescribed may be habit-forming. AVOID LARGE AMOUNTS OF CAFFEINE-CONTAINING FOODS AND BEVERAGES, such as coffee, tea, cocoa, cola drinks, and chocolate. FOR WOMEN: TAKING THIS MEDICINE while you are taking birth control pills may decrease the effectiveness of your birth control pills. To prevent pregnancy, use an additional form of birth control. DO NOT USE THIS MEDICINE if you are pregnant. IF YOU SUSPECT THAT YOU COULD BE PREGNANT, contact your doctor immediately. THIS MEDICINE IS EXCRETED IN BREAST MILK. DO NOT BREAST-FEED while taking this medicine.
POSSIBLE SIDE EFFECTS: SIDE EFFECTS that may occur while taking this medicine include dry mouth, nose, or throat; dizziness or lightheadedness; or drowsiness. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience sore throat or fever; rash; itching; bloating or swelling of ankles, feet, or hands; fast or slow heartbeat; vision changes; or unusual bleeding or bruising. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist.
BEFORE USING THIS MEDICINE: Some medicines or medical conditions may interact with this medicine. INFORM YOUR DOCTOR OR PHARMACIST of all prescription and over-the-counter medicine that you are taking. Infrequently, a very serious life-threatening decrease in the amount of blood supply to the hands and feet (peripheral ischemia) and rarely to the brain can occur when this medication is taken with drugs that affect liver metabolism (e.g., potent CYP 3A4 enzyme inhibitors). Do not take this medicine with macrolide antibiotics (e.g., erythromycin, clarithromycin, troleandomycin), protease inhibitors (e.g., ritonavir, nelfinavir, indinavir, amprenavir, saquinavir), azole antifungals (e.g., ketoconazole, itraconazole). DO NOT TAKE THIS MEDICINE if you are also taking efavirenz. ADDITIONAL MONITORING OF YOUR DOSE OR CONDITION may be needed if you are taking anticoagulants, birth control pills, corticosteroids, doxycycline, metronidazole, quinidine, valproic acid, theophylline, sumatriptan, medicine for high blood pressure or heart conditions (beta blockers), mood or emotional conditions (phenothiazines), nefazodone, fluconazole, fluoxetine, fluvoxamine, zileuton, clotrimazole, and other mild CYP 3A4 enzyme inhibitors. Inform your doctor of any other medical conditions, allergies, pregnancy, or breast-feeding. USE OF THIS MEDICINE IS NOT RECOMMENDED if you have a history of high blood pressure, heart or kidney conditions, porphyria, or megacolon. Contact your doctor or pharmacist if you have any questions or concerns about using this medicine.
OVERDOSE: If overdose is suspected, contact your local poison control center or emergency room immediately. Symptoms of overdose may include blurred vision, dilated pupils, hot and dry skin, dizziness, dryness of mouth, and slow or shallow breathing.
ADDITIONAL INFORMATION: DO NOT SHARE THIS MEDICINE with others for whom it was not prescribed. DO NOT USE THIS MEDICINE for other health conditions. KEEP THIS MEDICINE out of the reach of children. IF USING THIS MEDICINE FOR AN EXTENDED PERIOD OF TIME, obtain refills before your supply runs out.
MAJOR DRUG INTERACTIONS HIV Protease Inhibitors
Cont next post

Title: Re: My 1st Post
Post by Lori on Oct 11^th, 2003, 8:29pm

Con't
HIV Protease Inhibitors increases the effects of Bellamine S. Poor blood circulation can result from narrowing of blood vessels. This can cause coldness in the legs and arms, bluish skin tone, tingling sensations and pain. Shutting down blood circulation is dangerous as lack of oxygen can cause tissues to die off. In severe cases, amputation or loss of limb may be necessary.
Macrolides
Macrolides makes the effect of Bellamine S greater. Poor blood circulation can resultfrom blood vessels being made narrower. This can make symptoms appear such as coldness in the legs and arms, bluish skin tone, tingling sensations and pain. Shutting down blood circulation is dangerous as lack of oxygen can cause tissues to die off. In addition blood pressure may go up and chest pain may develop from narrowing of blood vessels in the heart. There is a potential for grave consequences such as heart attacks orthe need to amputate fingers, toes, etc.
STEROIDAL CONTRACEPTIVES
These medications may combine to decrease the effectiveness of some STEROIDAL CONTRACEPTIVES(oral contraceptives), increasing the chance of pregnancy.
Estrogens
These medications may combine to decrease the effectiveness of Estrogens (estrogens), increasing the chance of pregnancy.
Anticoagulants(Oral)
The blood thinning effects of Anticoagulants(Oral) are lowered by the use of Bellamine S.
Imidazoles
When taken together, Imidazoles may increase blood levels of Bellamine S. This increases the chances of having side effects including bluish and cold fingersand toes from poor blood circulation, tingling, chest pain and high blood pressure.
Voriconazole
When these medications are taken together, Voriconazole may increase the effectsof Bellamine S, resulting in serious side effects.

Title: Re: My 1st Post
Post by don on Oct 11^th, 2003, 9:13pm

http://www.pharmacyhealth.net/d/bellamine-2597.htm

Title: Re: My 1st Post
Post by Wendy1 on Oct 11^th, 2003, 9:22pm

Correct me if I'm wrong, but is Bellamine S the same as Bellergal S? Diamond Headache Clinic (don't go there anymore) used to prescribe this with about 5 other meds, but it did not seem to be effective in breaking my cycle...

Title: Re: My 1st Post
Post by tsayswhy on Oct 11^th, 2003, 10:30pm

Welcome Lee Ann

Sorry your husband is going though this. But your in the right place now, lots of support here and good information. Loads of reading material to better understand what cluster's are all about .took 5 year before i found this site sure wish i found it sooner.
wish your husband PF :'( and stick around sometimes the supporter need support too!!

Title: Re: My 1st Post
Post by Edna on Oct 11^th, 2003, 11:29pm

Hi and welcome Leeann, glad you got to find us for both you and your husband's sake.

Read lots here, and ask any questions you can't find answers to.....as you'll quickly learn, many here will certainly help all they can.

Wishing pf moments for your husband,
EDNA

Title: Re: My 1st Post
Post by TxBasslady on Oct 12^th, 2003, 12:12am

:)

Welcome Lee Ann,

There is a wealth of information here.

And.....more support and love then you can ever imagine. ;)

Sending lotz of pf vibes to your hubby.

Jean

Title: Re: My 1st Post
Post by Charlie on Oct 12^th, 2003, 2:45am

Welcome aboard Lee Ann.

I can't speak to the drugs but the others definitely know what they're doing. Your husband doesn't need to worry here. We all know exactly what this horror is like. I hope you stick around as there are lots of good ideas here.

Here are two helpful links...One being our best description of this disease to help others understand that this has nothing to do with what anyone thinks of as “headache,” and the second, is a technique that I found very helpful:

http://www.ouch-uk.org/ch/note_colleagues.cfm

http://www.netsync.net/users/charlies/

Keep in touch,

Charlie

Title: Re: My 1st Post
Post by stevegeebe on Oct 12^th, 2003, 8:29am

Welcome Lee Ann.

I have started a whole new group of meds yesterday one of which is Bellaspas. When I looked it up the dope sheet was the same as what Lori posted.

I'm now have in my pot, Verapamil, Neurontin, Cafergot and Bellaspas.

First full night sleep since I can't tell you when.

Consider yourself lucky that you found a Doc that knows about CH. Continued luck with the journey and again welcome aboard.

Steve G

Title: Re: My 1st Post
Post by taraann on Oct 12^th, 2003, 9:40am

Hello and Welcome to the boat Lee Ann (love your name, my mom was a LouAnn:-) ) SOrry your hubby is in pain. This is a great place for support and info so stick around and have your hubby drop by and at least read all the info and maybe start posting to us! I have found it much easier to cope (emotionally) with CH having ppl to "talk" to that understand what I'm going through.

Title: Re: My 1st Post
Post by Prense on Oct 12^th, 2003, 9:58am

Welcome aboard!

Unfortunately, diagnosis is the first step in a long battle for many of us. The cards are already in your favor though with the neuro. There are many different preventatives used for CH, but not one works for everyone...it's trial and error. Same goes for the abortives. If your husband finds he doesn't like the spray for whatever reason(s), the injection version works in about 10-15 minutes. It is quite painless as well...hard to get it in quantities though. Hang in there, and read read read!

Chris

Title: Re: My 1st Post
Post by jmorgan52 on Oct 13^th, 2003, 8:19am

According to Lori's post, Bellamine S is an ergotomine.

The imigran (imitrex) I get has a warning that it should not be taken within 24 hours of taking ergots.

Anyone know more about this?

John

Title: Re: My 1st Post
Post by shinydellgirl on Oct 13^th, 2003, 9:24am

Thank you all for the warm welcome and helpful information. I found Charlie's technique interesting as one of the questions the neuro asked was if my husband woke up with his hands asleep. He had in fact woken that very morning with his hand asleep and dreaming that he had glass stuck in it. Weird!!! The neuro wants to schedule an EMG for possible nerve damage in his arms. He asked this question after he had hit him with the rubber mallet and didn't get the response he was looking for. No HA since taking the Bellamine S and he is sleeping great. It's still too early to tell, but at least he is sleeping well. By the way, my husbands name is Dan. Thanks again for the warm welcome.
Lee Ann