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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Glyconutrients, Melantonin, Ice Packing
        
(Message started by: Judy_K on Feb 6^th, 2004, 6:47pm)

Title: Glyconutrients, Melantonin, Ice Packing
Post by Judy_K on Feb 6^th, 2004, 6:47pm

My husband, Jon, is still in a cycle since mid-October. Has tried Paxil CR without success. Currently on Verapamil, Topamax, Cafergot, and Imiprimine at night. The neuro last week told Jon to double the dose of Imiprimine to 2 pills at night. Still getting Clusters mainly around 9:00 p.m. when he goes to bed. Once in awhile gets our hopes up when he misses a day or even two. He did loose his job the beginning of January. I'm trying to encourage things either OTC or like ice packs. If its the carotid that's dilated with these headaches wouldn't be best to ice the front of the neck? A pharmacist is encouraging taking up a program of glyconutrients? I'm skeptical because he would not say that it's good for stopping cluster headaches, kept saying it's not "disease specific". Yah, right!! But after this long, a person feels they need to keep an open mind and research. With us now only on one income (mine) it seems like a costly program at $100 per month but there is a 90 day money back guarantee. Still skeptical! Anyone tried it with any success? Jon may try the melatonin. But will check with his neuro about it before trying! Also thinking about the 02 for the discomfort after the headaches! Sure appreciate this web site and any responses!

Judy_K

Title: Re: Glyconutrients, Melantonin, Ice Packing
Post by t_h_b on Feb 6^th, 2004, 7:41pm

Here's my thoughts.*

O2 is an abortive and can actually stop the headaches--it's not used for pain after the headache. Your husband should definitely try it--use the link on the left for information. It's cheap and safe. Imitrex injections or nasal spray is another good abortive, expensive without insurance. He should ask to try that, too.

Ice packs help a little but aren't adequate treatment. I apply them to my eye, the side of my face, and the back of the neck. Probably the pain is from the trigeminal nerve.

The glyconutrient thing sounds useless unless the headaches are caused by hypoglycemia. Probably an expensive ripoff. Try telling the pharmacist that you can get it for $50 a month elsewhere and if he then comes down on the price you know that it is at least overpriced if not a ripoff.

Sounds like your husband is on a lot of drugs, maybe too many, especially considering they aren't working. Maybe he should cut back on the number of drugs and try different ones.

The verapamil he's taking is a common preventative (maybe the most common) but you have to take enough, probably at least 480mg to up to two or three times that amount. Some say regular release is more effective. A lot of people also use lithium in conjunction with the verapamil. See the medication link at left.

Cafergot has caffeine and could interfere with his sleep.

Also melatonin 0.5mg at bedtime has stopped my clusters almost completely. It has helped others but not everyone. He could start with that for a few days and if it doesn't help then increase it in 0.5mg increments until he gets to 12mg and if it isn't helping then it probably wont.

As far as skipping a day every once in a while, this thing is tricky and does that just to aggravate you and get your hopes up. Accept those days as a wonderful vacation from the pain and if it is the end of the CH it will be an unexpected gift.

Do all the learning that you can and don't be afraid to ask your neurologist for particular medications.

If he is in a cycle since October could he now be chronic? I hope not, maybe some others could give input on this. (I'm chronic and just realized I don't know how long the clusters last because I've only had one reeeeeaaallllly long one!)

On behalf of your husband, I would like to thank you for supporting him. There is a lot of help to be found here from fellow ClusterHeads and other supporters and just knowing that you're not alone in this is important.

Thomas

*Remember free advice is worth exactly what you pay for it!!!

Title: Re: Glyconutrients, Melantonin, Ice Packing
Post by toader on Feb 6^th, 2004, 10:09pm

Sounds like you need a new neuro. You may be on the right preventives (Verp and Topomax is what I'm taking), but you need some abortives. O2 is a must. Imitrix is a must.

Too early to call your hubby chronic - probably meds are just not right. I was on "long acting" Verap and my neuro moved me to "short acting" and that helped. Also, my dose of Topomax had to be doubled to 200mg and had to be put on 9mg on melatonin before I got over my night attacks.

Ice packs cannot hurt. I had an ice pack on my head 24/7 for 3 weeks straight. If it feels good, do it.

Pardon my french, but fuck the glyconutriowhatever crap the pharmacist is pushing. I really hate these bastards who try to make a buck off of other people's pain.

Read up all you can on this website - it's a godsend.

Title: Re: Glyconutrients
Post by floridian on Feb 7^th, 2004, 8:38am

What I have seen on the net about "glyconutrients" seems hucksterish. (www.glycostory.com, www.glyconutrients.com, www.glycobusiness.com) These are vague on science, and big on testimonials. I couldn't find specifics on products (ingredients, prices) but there are several people who will call me with information if I give my name and phone number.

The claim is that 8 sugars are essential for health, but most people get only 2 from their diet (no details on the 8 essentials, or 2 we get). One link to an article at New Scientist (a good science mag) dealt with protein-sugar chemistry, but I couldn't see how it related or supported their claims directly.

The largest number of testimonials for glyconutrients is for autism, fibromyalgia, allergies, auto-immune disorders, and the lungs. One page has a testimonial section for "business sucess" - you too can be a distributor!

Two Pubmed abstracts on the topic of glyconutrients - this one seems most relevant. It mentions the "8 essential sugars" and shows that (atleast in a test tube) the glyconutrients can improve some immune paramaters of people with chronic fatigue. Ok, maybe there is something to glyconutrients, but who besides CFS patients does it benefit, and at what cost?

Quote:

Integr Physiol Behav Sci. 1998 Jul-Sep;33(3):280-7.

The in vitro immunomodulatory effects of glyconutrients on peripheral blood mononuclear cells of patients with chronic fatigue syndrome.

See DM, Cimoch P, Chou S, Chang J, Tilles J. University of California, Irvine, Department of Medicine, Orange 92668, USA.

In humans, eight monosaccharides are required for the synthesis of glycoproteins. Dietary supplements that supply these crucial sugars are known as glyconutrients. A glyconutrient compound was added to Peripheral Blood Mononuclear Cells (PBMC) isolated from normal controls and patients with the Chronic Fatigue Syndrome (CFS), a disease associated with immune dysregulation. The in vitro immunomodulatory effects were investigated. Cell surface expression of the glycoproteins CD5, CD8, and CD11a were significantly lower in patients with CFS compared to normal controls. Addition of glyconutrient homogenate to PBMC from patients with CFS stimulated with phytohemagglutinin significantly increased the expression of each glycoprotein. Furthermore, natural killer (NK) cell function was reduced in CFS patients. The glyconutrient preparation significantly enhanced NK cell activity versus human herpes virus 6 (HHV-6)-infected H9 cells in an 8 h 51Cr release assay compared to placebo for PBMC from patients with CFS (p< .01). Finally, apoptosis was significantly higher in patients with CFS. The percentage of apoptotic cells was significantly decreased in PBMC from patients with CFS that had been incubated for 48 h with glyconutrients. Thus, glyconutrients improved abnormal immune parameters in vitro in patients with CFS.

I would consider taking supplements of specific sugars if I there was concrete scientific information that these might help with clusters. No such information is available at this time. I'm saving my money and looking for something that has more than glittering generalities.

Title: Glyconutrients - Do it yourself and save
Post by floridian on Feb 7^th, 2004, 9:20am

OK, I did some more digging and found an article that lists the 8 essential sugars. Contrary to the marketing claims, you can get all 8 from your diet - some sources of the various sugars include eggs, fungi (shiitake, reishi, yeast - yes, bread and beer yeast), milk, fruits and vegetables, and cartilage (cow or shark are mentioned, probably chicken as well). Many people do not eat enough fruits and veggies, and few people eat significant quantities of mushrooms.

I suspect for most people, simply adding shiitake and/or reishi (aka ganoderma or Ling Zhi) would do a great deal to round out their essential sugar intake. Daily tea or stir fry with shiitake or reishi tea would set someone back a few dollars a month if they bought in bulk. The fru-fru gourmet packages in some stores are ok if you just want to try shiitake, but too expensive for frequent use. Asian groceries have dried shiitake by the pound, for a lot less. Maybe add a glucosamine supplement (good for connective tissue, arthritis, etc) for another few dollars a month. Put the balance of the $100 a month you didn't spend on glyconutrients towards fruits and veggies, ( or in your bank account if you already eat plenty of those).

Here is a link to that article that lists the 8 essential sugars: http://www.bellaonline.com/articles/art16104.asp