Info found during my Quest to find the cause of HH...

Jezza

Jezza

Well-known member
Hi there...

I thought I'd show my fellow HH sufferers some love by posting the current result of my epic quest :roll: to find out what is causing HH, which really, this site is all about...
I haven't really screened everything because it's accumulated sites from months of looking after it added to my favourites (which is bad). Sometimes it might be the same information twice, but I'm sure many of you will find some interesting things in there. I figured, since the explanation most medics give is 'the autonomic nervous system is overactive' I'd look at some things that might go wrong with important separate elements of that nervous system, for instance the pituitary gland or the adrenal glands.
In most cases docs only look at the thyroid gland and neglect the others which might be a mistake.

In case of pheochromocytoma I would look at the CNN reference...quite clean cut info, and most things you need to know are in there.

I hope this could help some of us...Or a medical student who needs to quickly write an essay...here you go everything is right there :p

ON PHEOCHROMOCYTOMA

http://edition.cnn.com/HEALTH/library/DS/00569.html CNN Pheochromocytoma

http://jcem.endojournals.org/cgi/content/full/88/2/550?ck=nck More on pheochromocytoma

http://pheochromocytomasupportboard.yuku.com/ Stories of some people diagnosed with pheochromocytoma

http://www.emedicine.com/med/topic1816.htm Even more on pheochromocytoma

ON PITUITARY TUMORS

http://blessed-beyondmeasure.blogspot.com/2006_11_01_archive.html Personal story pituitary tumor

http://www.neurologyindia.com/artic...issue=3;spage=390;epage=391;aulast=Chatterjee Intramedullary tumor with HH

http://www.neurosurgerytoday.org/what/patient_e/pituitary.asp Info on pituitary gland and pituitary gland tumors

http://www.revoptom.com/handbook/SECT54a.HTM Pituitary Adenoma

http://www.cancer.gov/cancertopics/pdq/treatment/pituitary/HealthProfessional/page2 More Pituitary gland tumors

OTHER NEOPLASIA

http://radiographics.rsnajnls.org/cgi/content/full/23/1/29 Neurogenic tumors in the abdomen (fi adrenal gland) NOW WITH BONUS EXTRA PICTURES

http://www.spinalcordtumour.org.uk/stories.htm Spinal cord tumors, testimonials (although no direct referencing to sweating)

ON SYRINGOMYELIA/CHIARI MALFORMATION

http://users.pandora.be/zeldzame.ziekten/List.a/Acm.htm Chiari Malformation, often causes a syrinx in the spine, which could cause HH

http://en.wikipedia.org/wiki/Syringomyelia Wikipedia on syringomyelia

http://www.ccm.ucsd.edu/AC.htm More Arnold Chiari

HH IN RELATION/COMBINATION TO BACK PAIN

http://en.wikipedia.org/wiki/Ankylosing_spondylitis Back problem linked to HH (ty Baller86)

OTHER COOL FINDINGS ABOUT HH

http://www.springerlink.com/content/1x755x74732621w2/ Link between HH and free radicals

http://www.wipo.int/pctdb/en/wo.jsp?IA=WO2004084905&DISPLAY=DESC Something very interesting about serotonine levels and HH especially if you consider cholinesterase
 
hydroman123

hydroman123

Well-known member
This is all very interesting but I was under the impression that focal hyperhidrosis(as opposed to general) is almost always idiopathic. Its great if you find a treatable primary cause but for the typical HH sufferer with localised sweating developing at an early age, searching for a cause will probably be futile. I found this out the hard way after spending an obscene amount of money on thyroid function tests and urinary VMA assays. Plus I have a strong family history of hyperhidrosis. This pretty much makes the results of testing a foregone conclusion.
 
Jezza

Jezza

Well-known member
Unfortunately, you're absolutely right...although even in those cases there has got to be some sort of cause, otherwise there wouldn't be an effect either I would say...

Anyway, in some cases it might definitely be worth checking out, especially in case of generalized HH or even moreso in atypical focal HH, or when apart from the sweating you notice some other fysical problems as well. If you suffer from solely palmoplantar or especially axillary HH I wouldn't say it's really worth it since like you say, chances are nothing will be found and especially concerning axillary HH there are now very good options to manage the problem. On the other hand, it can't hurt to have it checked out either, and maybe it's a case of the more people who do so the better it will be in the end. I'm sad to hear you had to pay that much money to have those tests, especially the thyroid test, because they should be standard issue in everyone with HH.

Anyway, when I started out looking for something to handle my HH at first I wasn't really into all these causes. I didn't know about them, except for hyperthyroidism, but I thought well even if I have that what am I going to do about it. My attitude was, just give me some botox shots and I'll be done with it, all the sweat will dissappear and I'll be more relaxed so I can break the circle, don't worry about the cause (I was then, influenced by the thoughts of medics and my family, thinking that there was a psychological factor in it, although deep down I already didn't really recognize that in myself).
Now though, about 3 years down the road, after a tiring 'battle' to get proper botox treatment only to then find out it's not the help I was hoping it to be, I strongly believe there is an identifiable underlying cause and it's definitely not psychological. Especially because I had a thyroid test just recently and the results were off, TSH was elevated and T4 slightly elevated, which is weird. I'm not at all convinced that in itself causes the sweating (in fact, I think it doesn't) but at the same time it's at least something, and now I'm kicking myself by not looking at this 3 years ago.

So that's why it could be helpful for people coming to this page, if not to find the cause, at least exclude some and not live on with this for years and then find out somewhere down the line that wouldn't have been necessary. My current dermatologist said that in about only 10% of HH sufferers they could find a cause, but that is worth trying for to me...
 
hydroman123

hydroman123

Well-known member
Hey Jezza, Sorry my post sounded so negative. I m glad your thyroid function tests are wonky- hopefully you ll find your cure. By the way where did you have your botox shots(axillae?palms?). Why do you say the results were less than satisfactory?
 
hels

hels

Member
have you looked into the other autonomic system related illnessess that also have no clear cause yet discovered- for example dyautonomia, fibromyalgia, and chronic fatigue? people who have these disorders often complain of heat intolerance and sweating.
 
Jezza

Jezza

Well-known member
@Hinder:
Accidentally I already did once a long time ago, but I believe her research focusses more on the hereditary factor, of which I'm personally not really convinced exists as such, although I think a yet to be identified underlying might have some hereditary factor. Personally though I have no realtives with HH. Still an interesting study though, I'm curious to what they'll find, although identifying (or not) a hereditary factor doesn't directly implicate finding a cure.

@Hels:
Is that the same as Autonomic Dysreflexia? I've read about that too...Could be a cause, but I think it's hard to identify the nerve damage much less do something about it, although it would still be good to establish a cause in itself, even if it couldn't be cured. The others I hadn't heard about as much, but obviously now I'm going to look into them :)

@ Hydroman:
No problem at all...It isn't my intention to let everyone believe this is the answer to everything, just an important consideration, so it's good to add the realistic note.

Anyway, for my experience with botox, it wasn't all good but it could be helpfull as a part of managing HH.

I've had botox shots in my hands twice, once in hospital, which was 10/9 in my palms (completely inadequate and due to the lack of proper sedation very painful) and once in a private clinic 50/50, including fingers, with a very effective ice cube sedation. Then once I had 25/25 in my feet in hospital with ice cube sedation. I'm up for axillary injections in about 1 month. I'm in the Netherlands though so I'm not sure in what country you are and how it works over there.
In the Netherlands it's a grey area, so you really have to push for it to get it and even then it's difficult. Axillary treatment is standard now (albeit with a waiting list of about 2 months), palmar and plantar remains a difficult proposition and other areas are out of the question completely (although I wasn't really looking forward to be treated with injections in those areas anyway :? )...or simply to big to treat (you can't inject almost your entire body with botox shots).

In my experience with the botox itself. First of all I would say not having enough injections is absolutely useless, so if you treat hands or feet I would say 50/50 is about the minimum you should get.
In my case, the botox works good in stopping the sweating at the injected sites, but even with 50/50 injections it's very difficult if not impossible to make that dry out the whole hands, which might be acceptable to a certain extend, but more importantly, in my experience it made me sweat more in other places, most noticeably the outsides of my fingers, but also generally...I was hoping the opposite to be true but it wasn't. Also in the fingertips the effect was a bit less, they were still mostly clammy. Overall, also considering that when I want the proper treatment with 50/50 injections I'd have to resort to a private clinic, but even apart from that, it wasn't a bad experience but personally I wouldn't immediately do it again, eventhough shaking hands and driving was absolutely better with the botox than without, it definitely wasn't the silver bullet I was hoping for. Maybe sometime in the future I'll try again in combination with other treatments though.

In any case in the current situation I'm still going to go ahead with the axillary injections though. I think it's a good solution for that area because it works better and I've found a hospital here that's willing to do the injections on a regular basis. The sweating area and amount of sweat is also smaller in the axillary region compared to hands/feet, so I'm hoping I will get less 'çompensatory sweating' from it, and it can still make a difference for my clothing.
 
hels

hels

Member
sorry my spelling is poor - its dysautonomia. Basically it just means a malfunction of the autonomic nervous system, one form is an inherited disorder of people usually of Jewish descent. The other forms are a bit hazy but usually people have problems with low blood pressure and heart rate as well as problems with heat (either too much or too little sweating). I have very low blood pressure so i think there is something in it in my case.
 
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