brethor9

I also have sudden onset petechia, cherry hemangiomas, and various other little red and brown dots and the small red spider veins. I know for a fact these just came on in the last 6 months as I have been getting more and more sick.....it was actually my hubby who noticed them as I have always had incredibly clear skin.....even my specialist noticed....thats how many have popped up.....and now I being tested for mast cell issues

Bren

1. lightheadedness and fatigue

2. severe pressure headaches

3. severe chronic pain

4. mottling of legs (turning colours)

5. severe shortness of breath, flushing, low blood pressure crashes, fainting

6. onset of tachycardia when sitting or standing until I was bedridden

started having symptoms over 4.5 years.....symptoms 4-6 were a quicker onset....basically within a year

I worked in a hospital setting for over 6 yrs in a very chaotic cancer clinic....I rarely sat down....was always on the fly.....I never experienced OI and POTS until after my partial hysterectomy...then thats when the trouble started I think they broke something during surgery............................

Bren

Hey all!

So recently in the last couple of weeks I went to see a Mast Cell specialist to start ruling in or out mast cell involvement in my illness. I have been diagnosed with several forms of Urticria and Dermographatisim.....blood tests for mastocytosis should be back in 6 weeks. In the meantime he has given me a script to start Doxepin. I have not had much luck taking any regular anti histamines make me so dizzy and naseous although i have noticed improvement in my leg pooling when on them.

My question is to all of you masties out there.....what can you tell me about Doxepin? He has only prescribed 10mg to start at night. He thought because it is also an old fashioned anti depressent it may help stabalize some of the POTS stuff too. How many of you have seen good results with this medication?

I have been so very sick and struggling but am really afraid that this could make things so much worse. Would love some feedback

Bren

ME too!!! I agree with Issie I dont think the fluids we drink get to really where they need to go.....I think thats why IV hydration works so well it actually gets to the cells and tissue...why dont they study this anomoly more?

Bren

8lbs 7 ounces 23 inches long......3 epidurals that didnt work....local freezing didnt work....finally general anasthesia birth......sometimes I wonder if all the anasthetic I have undergone in the last 9 years hasnt screwed my nervous system up......but thats another theory I myself was 2 pounds at birth....maybe thats another factor.........

Bren

http://www.sfn.org/index.aspx?pagename=brainBriefings_thirst

Not sure if this link will work; but I was also interested in this topic because I was telling the mast cell specialist last week how I am never thirsty. I could literally go for days without drinking if I didnt need it to live. I have always had this problem. This article from neuroscience actually states there are people who have deregulation of the receptor in the hypothalamus that sends the signal to tell you to drink. It says it is most common in the elderly.

It also says that the hypothalamus is responsible for temperature regulation, etc......since so many of us have temperature issues I am wondering if there is an issue in the hypothalamus with some of us?

Bren

WOW!! That is way too creepy.......

Hey Tenille!

My episodes are like this; all of the sudden I get really hot (like inside out) like a heat flash and my face and trunk get patchy, itchy and red, shortness of breath, my head feels congested, very high heart rate,high blood pressure, nausea, feel not right (like I am stroking out), after a bit my blood pressure starts to go low and I have chills, so cold!!! and I start to feel very tired and the shortness of breath gets worse...sometimes I have to be taken to the hospital before passing out. I am just recently being treated for mast cell issues...when I asked the specialist about my episodes he said they could def be the start of anaphalaxysis so to be careful.....now when I feel this coming on I right away take benadryl to try to head it off.....hope thats a little bit helpful to you I am sure everyone reacts differently though....hang in there

Hugs

Bren

My episodes always feel like narcolepsy.....a sudden switch flicked on and all of the sudden I am fighting to stay awake....it is like a drugged state.....I have a friend who does have narcolepsy and she said it sounded similar but I definately dont have narcolepsy....I wonder if it might not be an insulin spike or something like that? Ive gotten used to them I dont have as many since I cut out gluten, carbs etc....and I am also just recently being treated for mast cell issues.....so maybe its related......

Bren

Before I got POTS I went through training for law and security......used to run two miles everyday...plus a 2hr weight training workout which included 200 crunches everynight......I also unloaded furniture trucks at Pier 1 at a part time job....I was really active.....a total exercise nut.......thats why I dont understand these doctors that say we are sick due to deconditioning?? I really dont get that? Most of us were in great shape before and during this illness until we crashed and couldnt function at all. Whats up with that? I almost wonder if it isnt that we stressed our bodies too much with being so active???

Bren

Hey Doozlygirl

I suffer from the exact same episodes as you describe......I always liken it to what narcolepsy must be like when an episode comes on.....I literally cannot stay awake. Its actually kinda scary....like you I get the chills...low core temp and my heart rate gets very low.....I actually do everything in my power to stay awake because my heart feels so weird I worry about passing out.....sometimes getting into a warm bath and taking a zantac helps me for whatever strange reason.....I wish we knew why it happens

Bren

I actually suffer from both SVT and Sinus Tachycardia often....none of my specialists are overly concerned.......have tried several BB's but they just make symptoms worse overall

Bren

I asked one of my specialists this question about why IV seems to hydrate better than oral and why no matter how much we seem to drink we are always dehydrated.....he said it might be more of a cellular dehydration issue that cant be easily fixed just by drinking. He is also trying to figure out why I never have the urge to drink.....like my brain just isnt sending the message that its getting dehydrated. Before starting florinef I would be admitted to hospital and fed 6 bags of saline before having any output and yet my kidney function is fine apparently....weird....

Bren

Oh Jen Bless your heart!!! I sooo agree with what you said.....I couldnt have said it better or with such eloquence thank you for that........

Hugs )))

Bren

Hey Naomi!

I actually posted this same topic question also....as I didnt start getting really sick until I started working in a hospital so I wondered if there could be any relation considering we are more exposed to different viruses and such.....

Bren

Thank you! Maiysa......it is difficult but I wouldnt trade him for the world....he is my heart and soul ....... hope you are doing well!

Hugs

Bren

I thought being the mother of an autistic child would be the hardest thing I would ever have to deal with......who would have thought that would now be a close second. My mother keeps telling me God gives you what you can handle....I have learned to handle the autism but this illness I am having a really difficult time mastering because it takes my focus off of whats the most important....making sure my son gets proper care and that I can continue being his biggest advocate I feel really robbed sometimes....

Bren

every morning for the last 4 years! its crappy......I actually dread waking up in the mornings for that reason..I also have nights where they wake me from sleep and go on for hours

...the only thing I have found to take some of the edge off is magnesium

Bren

Hugs Dani!!! I keep having flares too lately....2 days okay and then 3 days in bed...not sure why....I just cant seem to get on top of this illness right now

Bren

Julie- its ok you weren't anything but informative as always! The dismissals of very worriesome symptoms does get tiresome......

Bren

Is that because IV goes directly into the tissues and vessels that it always works so well? I have wondered about this also....no matter how much I drink it never matches getting IV fluids....so why is that? one Dr mentioned cellular dehydration which cannot be treated through oral consumption of fluids....mmmmm..... sorry for the trip to ER Dani! I hate going there too!

Bren

Wow Julie....I will take that under advisement also.....last time I saw the auto specialist I showed him my hands which were turning purple and white and he said it wasnt that serious just annoying

Bren

I think Rama may be right...I think with POTS the issues with improper blood flow circulation is the main reason for the brain fog....that and sometimes I think our bodies aren't using what oxygen we do have properly.....

Bren

Pulp! my legs totally change colour like that and I was told it is mottling/ blood pooling and is part of POTS/Dysautonomia with Hypovolemia....and that was the diagnosis through an autonomic specialist....I think you need to get another opinion....I think the only time you see it in normal people are the elderly because it is related to poor circulation....

Bren