Things I've Noticed

[Mad6string]

I'm trying to get some feedback on things I've noticed during cycle.

1. I've noticed that at the beginning and end of a CH cycle, my urine is very cloudy. It has a white cloud.

2. I'm usually a right side sufferer and that side is always stuffed up until I'm in an attack, then it's clear as a bell until the attack subsides.

3. My eyes seem to water more than anybody I know. I have to constantly be on the look out for 'eye booger'. That is present in and out of cycle but worse when in.

4. I don't sweat like most. I have to be doing some pretty vigorous activity to break a sweat. (I live in Ga. so I should sweat constantly, I would think)

5. I have a headache every single day. I'm not saying a cluster attack, I mean a 'normal' headache. I always wake with one in the morning and have one when I get off work. A Goody powder (crushed asprin) takes care of those.

Any feedback from you guys would be great. I don't know if all of us suffer the same things or I'm just weird. My Doctor says he can't find any reason for the physical things I've noticed.

Mad6string

[tingeling]

Hi

2. I'm usually a right side sufferer and that side is always stuffed up until I'm in an attack, then it's clear as a bell until the attack subsides.

I`m stuffed up, looking like a teddy bear..... It goes away, and the horrible nonstop cant break them attacks starts.

4. I don't sweat like most. I have to be doing some pretty vigorous activity to break a sweat.

I sweat like it doesn`t seem possible, or nothing at all!! Even if i run for miles, then maybe a little.

I go constantly to WC, or nothing at all. Thirsty as hell, or no thirst at all.

Seems we are kind a black and white in our bodies maybe....

Also talked to doctors, and they just say, no, you're so healthy. so, i don`t know. But since CH affect the place in our brain, that controls the inside environment, i believe it causes different variations of rarities

[Arde]

2. I'm usually a right side sufferer and that side is always stuffed up until I'm in an attack, then it's clear as a bell until the attack subsides.

I'm just the opposite, and I think most are.

[tingeling]

Yes, but it kind a goes away, and then it swells up again. Hard to excplain.

[Cassidy]

Hi Madstring,

1. I do notice cloudiness.

2. I have stuffiness on right side all the time. That does clear up during an attack.

3. Eyes are dry--- blame that on Benadryl.

4. Never sweat. Never!

5. Have sinus headache everyday. (had cat scan on sinus--no problem)

6. Have bright red flush on right side (cluster side) when near a trigger.

7. Get strange numbness-tingling-- no explanation--been checked out.        Leslie :-/

[alleyoop]

Lacrimation (the flow of tears), eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection), nasal congestion, rhinorrhea (nasal discharge/”runny nose”) are all associated with Cluster Headache, as well as: forehead and facial sweating, miosis (excessive constriction/tightening of the eye’s pupil), ptosis (drooping of the upper eyelid).

The 'normal' headache could be what they call med-overuse headache possibly from the Goody powders.  (See attachment)

I'm not sure what the cloudy urine is about, but it might well be from some other issue. 

bobb

Med-Overuse_in_CH_Study.pdf

[tingeling]

7. Get strange numbness-tingling-- no explanation--been checked out

Me too.

2. I have stuffiness on right side all the time. That does clear up during an attack.

Better way to describe it.... That was what i ment....

About the Benadryl, they dont have it in my country, do you people know if there`s another name on it, also in youre country?

[alleyoop]

About the Benadryl, they dont have it in my country, do you people know if there`s another name on it, also in youre country? 

From PubMed:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000704

Benadryl - Diphenhydramine

"Diphenhydramine is used to relieve red, irritated, itchy, watery eyes; sneezing; and runny nose caused by hay fever, allergies, or the common cold. Diphenhydramine is also used to relieve cough caused by minor throat or airway irritation. Diphenhydramine is also used to prevent and treat motion sickness, and to treat insomnia (difficulty falling asleep or staying asleep). Diphenhydramine is also used to control abnormal movements in people who have early stage parkinsonian syndrome (a disorder of the nervous system that causes difficulties with movement, muscle control, and balance) or who are experiencing movement problems as a side effect of a medication.

"Diphenhydramine will relieve the symptoms of these conditions but will not treat the cause of the symptoms or speed recovery. Diphenhydramine should not be used to cause sleepiness in children. Diphenhydramine is in a class of medications called antihistamines. It works by blocking the action of histamine, a substance in the body that causes allergic symptoms."

[Cassidy]

Bobb,

I agree that overuse of meds, especially sinus meds will cause the every day headache. I've tried to bite the bullet on that, but never can quite make it. I use the sinus rinse, but still have a hard time without the Tylenol etc.

I wonder if the no sweat problem (more than a problem--very dangerous) might cause the cloudy urine. Seems like one's body has to eliminate toxins one way or the other.

                                         Leslie

I have sort of given up on getting answers and just blame the screwed up hypothalamus thing. Especially the body temp. Chills when it's hot, hot flashes when cold, and no answers from any doctor. They just shake their head. Sometimes I think they believe it is my treatment for clusters. Am I paranoid? Probably.

[tingeling]

Am I paranoid?

LOL ;D

Am i a hypo-condor? Probably. Not. Just felt like it every time i talked with the doctor about this things.

But i think it`s more that they shake head because they don`t know

alleyoop, thank you

I read and found it is a antihistamin earlier. And a strong vasoconstrictor. But the antihistamin i get from doctor, seems to do nothing, and it seems Benadryl does?

Benadryl is a first hand antihistamin, so every antihistamin is a vasoconstrictor maybe?

[Mad6string]

My problem with the cloudy urine is that it only happens at the beginning and end of a cycle. That's how I know I'm fixing to start, even before the first shadows appear. When the cycle is about to end, I piss almost completely white for a few days and then the clusters stop. It does it every time. I can't figure it out. No kidney infection, diet doesn't change.

As for the constant headache, it doesn't matter if I take the Goodies or not. I can not take them for a significant period of time, say a month or so, and the headache is always there. I take the powders when it gets to be too annoying.  People take aspirin for their heart all the time. I don't think overdose is the problem.

Mad6string

[jayhedges]

Tingling...Which country are you from?

[davidj]

Damn, reading this thread makes me "happy" I only have Clusters. Sorry mad6string I have none of those other symptoms, the only thing I notice is when I get on the 02 a lot of times it makes me want to pee.

David

[tryptamine]

I've never noticed a difference in urine. I definitely do not sweat when I should be though. I also get frequent body temp changes. I too am a predominately right side sufferer, however i remain clear until the attack, then during the attack I flood out.

Cassidy are you taking Imitrex(sumatripan)? Whenever I take the stuff I get the strange numbness/tingling that you are talking about. Well, I get it regardless when the CH starts to subside (endorphins maybe?) but it is definitely much more noticeable after taking an Imitrex.

[tingeling]

x6th,

Yes!!! I`ve noticed that as well!!

[Cassidy]

x6th,

I am ECH, usually get 2 cycles a year. I went for aprox. ten years without any prescribed medication. When I could not take it anymore I got diagnosed and was prescribed the usual meds. I took them for about one year. The clusters increased in frequency and in pain. Topamax was my breaking point. It worked fine but I got lost taking the garbage out.

So, the short answer to your question is, no I do not take Imitrex.

I believe I have had success with hallucinogens because I did not use the traditional treatments for very long. Also i was free of those meds. and out of cycle when I started my farm and did the first dose of tea.

I have come to accept that the numbness and tingling just are part of the territory, because no medical person can give me any answer.

As I get closer to a cycle or a trigger, the numbness gets worse. Just another mystery that goes along with this condition.     Leslie

[tryptamine]

Tingeling: you notice numbness from imitrex, or just in general?

Cassidy: So you can predict your cycle by an increasing numbness? That is the first ive heard of that. I too am an ECH with about 3 to 4 cycles a year. I can predict my cycles by a tightening in my jaw and back of my neck and a generalized increase in pressure in my noggin. Yep, this is truly a strange and mysterious condition. Im glad you have found relief in hallucinogens, as have I. They are a godsend.