Today I Cried For The First Time In 35 Years .

[willows]

I've always tried to look on the bright side of life thought my illness and for the first 35 odd years of this I have , until today .

I went to see my own local doctor, there are only two doctors who have supported me, helped me and really cared for me in all these 35 years. But today my doctor admitted defeat .

He doesn't know what to do anymore for me .

I have developed the condition called 'Petechiae' yet another one to my growing list , but he doesn't know what to do to help me.

My sweats are out of control, blood pressure haywire, headaches on/off , sickness , bowels , digestion and fatigue all extreme............I'm just falling to bits here guys

So today he sat me down and said 'you tell me , what shall we try now , I'm looking to you and your friends on the POTS site for help , because I'm way over my head about this, and so are those so called consultants at the hospital '

So reading through the site we are now going to 'salt me well and ignore pepper '!!!!! ...........up the nortriptyline and up clonidine.

Its a game of a little of this and wait and see , he said that in all of his years as a doctor he has never before said to a patient 'take salt as much as you can get '

I've been and shopped , as us girls do , buying skirts and jumpers for the winter in a way to cheer myself up trying to keep myself from crying , silly I know but even writing this sets me off, I'm normally so cool, letting it go over my head , laughing at my problems and finding a brighter side to it all, but today I've discovered I'm ill , after 35 years of playing the fool its just hit home and I feel so lost and alone .

Willows ..................in need for one in her life some support .

[mom4cem]

((((HUGS))) Willow. Sorry you are having such a bad time. Quite normal for us to get fed up and need to breakdown. How long can one go on being tough and brave? It has to come out, so let it. I'm glad you have dr's who have been there, trying to help, that is a big plus. It just sounds like he or they have hit the wall, but not that they have given up helping all the way.

Hopefully with salt loading may help. It seems it can take quite a bit of this and that, and tweaking this and that to find something that at least helps us a bit.

Chin up, and I am sending you a nice box of fluffy, soft tissues for you.

Hang in there.

[labas_2u@shaw.ca]

Oh Willows!!

I wish I could help.

I can tell you a bit about the petechiae and how it applies to me. I don't know if it is applicable to you or not but maybe something in it might help......

I have an undiagnosed autoimmune disorder (which probably caused my dysautonomia issues).

Many years ago, before they knew it was autoimmune, I had ITP (idiopathic thrombocytopenia purpurea) which is a drop in platelets. One of the symptoms is petechiae. (platelets help clot the blood to stop bleeding) I saw a top hematologist in Toronto who could not figure out my platelet problem. (Lupus-an autoimmune disease was also ruled out at this time). Even though my platelets came back up to within normal levels, I still continued to have outbreaks in petechiae (along with bleeding problems)

About three years ago, after a bout of rectal bleeding (and my platelets remaining in the normal range) I was tested for Von Willebrand's disease. Now, this is a hereditary disease and I have no family history of this but rarely it can be 'aquired'. You can 'google' it under 'Aquired Von Willebrand' This has to do with clotting factors or lack of. I have too much (again very rare) of factor X1, which disrupts the clotting cascade. (Hemaphelia is lack of factor V111) My doctors believe my problem is caused by the autoimmune disorder which is disrupting the clotting factors. Hence the petechiae.

Most days, I have no problems with it. But if my autoimmune problem is active (and I can tell by the petechiae) I have to be more careful - not a good day to get run over by a bus...... Cuts bleed for longer periods of time and even having blood drawn can leave a bit of a mess if constant pressure is not applied.

Willows, I have no idea if this applies to you or not, but, if your doctor is stumped and looking for suggestions.....he/she might want to look into the autoimmune angle and test your clotting factors. Oh, and just to make it more interesting, clotting factors can be in the normal range but not be working properly (I think this applies to factor V111 - but I am not sure.)

The only medication I know of that helps is prednisone for when the autoimmune issue is active. I haven't taken any in years though because I don't like the side effects. The petechiae and bleeding is just something I put up with. Pain in the behind but so is everything else about this disorder.......

Maybe worth a shot to ask your doctor about?????

Good luck and please keep us updated

Maggs

[cardiactec]

hey there, funny you should post this. i have had a hard time with feeling as if i was "allowed" to express my frustrations with pots, after only 6 years (not 35yrs, but seems like eternity for me).........i want to share with you, and others, as to why i felt this way...........and i think me expressing my feelings out on paper regarding this, and everything else i've gone through was the smartest thing i did most recently.........actually my PCP has been great over the past couple months, allowing me to go in and just sit to vent over this whole condition........he listens and cares deeply with what i go through, even if he doesnt understand it personally himself..........anyway, he had me write a paper (havent given it to him yet, i just wrote it) about "what POTS means to me".............it is basically my story of what i have faced over the past 6 years...................i'd find a good doc, perhaps your PCP or a counselor, to be able to vent.....writing a letter is a good idea...........i tried to do it in a way that my doc could understand, through analogy................

take care and hang in there. you are not alone.

[anna]

Hello Willows,

Sorry to find you have more to deal with, just wandering if you have ever been to see Professor Mathis? I hear he knows a lot about ANS and so on, Might he be of use to you?

Anna

[lalalisa]

Willows,

I'm so sorry to hear that you are really struggling. It is definitely ok and a good thing to face your situation and to actually grieve over your illness. I'm not suggesting that you should stay in this "place" but it's definitely a valid thing and very understandable!

Wow, your dr. sounds really great! The fact that he honestly expressed where he's at with your case is a blessing and doesn't happen that often. If he really is asking for help from the POTS community maybe he would be willing to talk with Dr. Grubb in Toledo, Ohio about your case. I realize that no one dr. can make everything better but maybe he could help point him in a new direction.

Just a thought...

It sounds like you are really having a rough time. Hang in here and know that youre not alone.

Lisa

Oh, I almost forgot. I just wanted to say that I'm encouraged by your great attitude - even after this many years! I've only had POTS for 4 years and I just can't even imagine all that you've been through!!

[kmpower]

Hugs from me, too. I am sorry you are in a down mode on this roller coaster. I agree with the others that your bravery and optimistic attitude for so long is inspiring, and hopefully it will return before you know it.

I get petechiae on my legs when I stand much without my stockings and my proteins are low and it is hot. It is just from pressure from the fluids at the bottom of my body which should be getting up to my upper body. Does yours have a pattern?

Well, I hope you and your doctor have success getting more ideas at this site soon, very soon.

OLL

[persephone]

Better to cry sometimes- it's cathartic. I've had various doctors say to me that they'd be worried bout my mental state if I wasOK with living like this! It would be abnormal not to be upset, especially in 35 years of this crap. When I cried up in London last year in clinic, the Autonomic nurse was really taken aback- they had all thought up there that because I always seemed to be jolly and good humoured that it didn't get into my head, which of course, it does. So it did me good to show how it really made me feel.

I agree with others here- you need an autonomic specialist rather than local doctors. It's a very specialised condition- in the same way as not all cardiologists are pacemaker experts, so they're not all POTS experts. The same can be said for neurologists too- some of them might specialise in aneurysm or epilepsy, which wouldn't help you either. Srely you must still have connections with the National in london from when you saw Roger Bannister there? Professor Mathias worked with him on his doctorate and he is now said to be the leading UK expert on autonomic dysfunction. I met a lady from your nec of the woods at my appointment last year- she had come up from Cornwall.

But there are others, aside from Mathias, as my seven week stint in Dundee proves (although none in Bristol I might add). I've now found an electrophysiologist in Oxford who knows the condition. Have you seen an electrophysiologist? They are really the people to talk to about POTS in the UK, unless you can find a neurologist who has an excellent knowledge of cardioloigy too. Start off by looking up www.specialistinfo.com, and www.stars.orguk are a outstanding. Any time I have contacted them they have been more than helpful' they also can probably tell you who is good for POTS in your area. Try emailing trudie@stars.org.uk and see what she comes up with. Or maybe try treatments in the US?

Can't say much more, having a mindblowing migraine myself at the moment and feel like I'm making no sense.

[willows]

Thank you all for such kind thought today.......I'm a bit more together now I've had another sleep.

First ............thanks for the item about the blood clotting , I've just remembered by real mother ( brought up by granny) had a clotting problem , I think it was called mild hemophilia.

Second...........what a brilliant idea to see if my GP can write or speak to Dr, Grubb , I will get an email of to the doctors tomorrow when I feel stronger .

Thirdly.............thank you so much for the list of organisations to email and look up , my hubby will make this his good deed for the night and see what he can find for me.

It was he who frustrated by my condition and lack of UK help who found this site !!!!

Dr Mathias never actually saw me , can you believe that , the staff on the ward ignored my paleness, vomitting, inability to stand upright plus passing out and sent me for a scan via wheelchair , the scan people where horrified .

So we now have no faith in UK consultants and that goes for my own GP to , he and she ( 2 of them ) are totally disgusted with London.

When they wrote and asked why I had a sweat test while still on the ant-sweat drugs ..........not one so called doctor from the national hospital would reply or speak to my GP in the phone , my doctors are disgusted with the treatment I've had .

Silly thing is Sir Roger Bannister one of the first men to find and sort this condition, he saw me over 35 years ago and first diagnosed something wrong'

But since then I've been left to my own devices and to 'cope as best I can' .

Well I'm finding it hard to cope now as there are just to many pieces to this illness jigsaw.

Willows.

[Laura]

Willows, I'm sorry you are going through this. You've got some wonderful friends here to help and support you as much as we can and it looks like some good suggestions have been given. I hope you can find something here to help. Laura

[shannon]

Willows,

Sounds like you are really having some tough times. I wish I could do something to make you feel better

It's okay to cry, though. And you can come onto the forum for support anytime, and we will be here for you.

I guess the fact that your doctor is able to admit when he is in over his head is a good sign....at least he doesn't minimize your pain. Still, it must be very frustrating for you. Perhaps you could have a referral to a POTS specialist.

So sorry you are going through this, and I will keep you in my thoughts.

Shannon

[persephone]

To be fair, I've never so much as had a prescription from the National, let alone any sensible testing, so I guess it's not as cut and dried as saying go to London. I've been where you are now- feeling totally horrendous and like there is nowhere left to turn. But something always comes up- look at the treatment I had in Scotland! They were really good. It may well be that my chap in Oxford is the nearest Good Thing for you. If that's the case the new NHS 'choose and book' system coming in will let you be referred to him. Keep the faith!

[bttrflyamby1981]

Just wanted to add my support! I'm not able to offer much, but know that I'm here for you.

Amber

[corina]

willows,

i am sorry you're having such a difficult time. i wish i had answers, but as it is much too late for me i have nothing to offer, except that i think of you and that i hope you will feel a bit better soon. it is okay to cry (who wouldn't in your situation) and take the time to mourn everything your illness took from you. after that we have to go on and keep our chin up.

thinking of you,

corina

[Guest Anne L]

I've always tried to look on the bright side of life thought my illness and for the first 35 odd years of this I have , until today .

But today my doctor admitted defeat .

He doesn't know what to do anymore for me .

Willow,

I'm so sorry just to read your signature and see what you are battling. Tears at times seem very appropriate. Your wonderful outlook has brought you this far, and I'm sure you'll find this spirit soon. I'll pray that you do.

My doc (new, young FP) learned all he could about the tHings bothering me. After every heart test available showed nothing he was in tears. He told a new patient that he didn't believe I would refer him to anybody since he couldn't help me.

.

He's a fine doc and I appreciate his attitude. If testing won't lead to treatment, he doesn't push it. He learned enough about Dysautonomia after meeting me to prescribe the only Rx available. Now he avoids any mention of it. His appoointments are scheduled for 15 minutes. I only go for other issues . Group practice? medicare?

Where I live there is nobody who specializes and the neuros never heard of it UVa has a new person listed in neurology but when I called to make an appt no one in the office had heard of it. I had to spell it and they still couldn't find it in their resources. Not a good sign.

You've had some promising suggestions. I ended up with a counsellor in the medicine pychiatrists office. It's a safe place to cry . And here in this group.

Best wishes for finding who or what you need --besides your many friends on this site.

Anne L

[willows]

Thank you all so much for your support and your care, it really mean the world to me to know someone listens and knows just how this feels.

Having no family except my husband and son here ( both my daughters upped and went years ago and just dont care) I sometimes feel guilty when I try to talk to them, after all a 15 year old boy doesn't want to see his mum in pain let alone have her crying at him saying she cant cope at this time, however much he loves her and its not fair to do this to him.

And as for my husband, however wonderful and caring he is , he to sufferers with pain, stiffness and is now 'kissing the floor at times ' he is also off in two weeks time for operations on his feet so is worrying about this.

I have drawn up a plan of action as follows , this was with your help guys , I couldnt have got my head around where else to start without you all.

1. Ask my doctor to do a acquired Von willebrand blood test and check factor V111.

2. Get my lady Doctor ( who is a charmer) to either write or speak to Dr Gubb for advice( thank you for all the contact info Lisa)

3. Find this special electrophysiologist in oxford ( help , could do with a name if you know of him) and get a referral to him via NHS.

4. As my solicitors for an amount to be considered from my trust fund to bring me to the USA for referral to DR Grubbs clinic or ask my publisher to pay some book royalties up front to send me.

The 4th option did have another way of raising money , but hubby said 'considering the state of yourself , your heart and the pain selling your body for cash isn't an option dear' ......................OH ! what a cheeck men .

Willows.

[Maxine]

Willows,

I'm sorry your at such a brick wall these days. This illness can be so overwhelming----this and that going wrong--------and all the information being so over the doctor's heads. On a positive note, it's good to hear your Doc wants to learn from your fellow POTS peers------------that's is really great.

You have a lot going on---but it sounds like your getting a good plan of action going.

I'm so fortunate to live very close to Dr. Grubb's office---less then a mile. But I do know what it's like to travel to see other doctors----for my other conditions.

Don't worry about venting---or expressing your frustrations---or crying----I cry a lot---and feel better when I do. It's when I'm numb---and can't cry that scares me. Crying is natural---it's your bodies way of releasing stress---and grief. This stuff is hard to deal with---and after a while all this wacky stuff that happens to our body gets real old at times were bound to crack.

You'll get through this..........I'm pulling for you....

Maxine :0)

[Guest dionna]

i am so sorry you actually have the Petechiae. you are so much stronger than me. POTS has made me cry a handful of times when i think about all the things i have lost and what i may have to "look forward" to. hang in there. you are strong. here is a smile for you . i wish there was a hug smily too. i would give that to you as well. be careful.

dionna

[nadine]

Willows-

just wanted to say I was thinking of you and glad to see by your last post that you have a plan and a bit of your humor back as well---

[Tanzanite]

Just reading your post has made me cry, got tears running down my face now. All I can offer is empathy and hugs.

[Dizzy Dame]

Hi Willows,

I'm so sorry to hear about what your doctor said. Hopefully you could look for another physician who may be a bit more knowledgable? You'll be in my thoughts.

-Lauren

[BEE]

Willows..Just wanted to pipe in that your not alone in this..it is a constant struggle with many days that are good and many that are not so good. Thinking of u..Bee

P.s. Big hugs!

[willows]

Hi , guys just message to Maggs , so if I'm writing rubbish forgive me as I'm rather silly today because of drugs from lastnight increase still here.

Rather like having a chicken stuck on my head whilst running a two mile minute with chains around my ankles .......................mmmmmmm

I slept last night for first time in about 5 years, went from 11.30 pm to 8.30 am ,hubby and son got so concerned they kept coming to pock me apparently to make me move something , hubby said at one time I was breathing so shallow he actually got down with a mirror to see if I was alive and still breathing ....................oooppppps where's the will kept again dear ?

On a positive note; ............well , I now have a bright new shiny blood pressure machine all of my own and a small wrist alarm heart monitor, so if whilst out I go silly and heart drops like a brick I'll no, as will half of Tesco's all the local dogs in the area and most of the pages!!!!! here that will be fun wont it , wicked!!!!!

I think I will cut back on the northriptyline again as its this thats doing it , I'm now on 10 clonidine a day and by gum NO SWEATS as such ...............its better than winning the lotto .

Think I'd better go now, just did a spell check on above , ha, ha, ha, ever other word was utter rubbish ( so fixed them ) or you would think me crazy . Hope above made sense , feeling happier now as slightly off my head ..............and silly , I have this overwhelming thing at minute for humming silly songs to myself ........... Willows.

[willows]

Well still not quite right in the head guys , if you know what I mean.

I decided to stay on the amount of nortriptyline to give it a fair try , and the clonidine still seem to be on top of the sweats more , as yet no side effects like as before on this high a dose, the 'nastys ' alst time were ; inability to swallow or talk first thing in the mornings, dry eyes, painful dry nose lining , acute thirst .

So with this amount of drug coursing through my body why am I still awake and up at 2 am (UK time) when I am taking them to according to the doctor;

A. help me sleep.

B. help with pain control.

C. make me totally relaxed

D.control my blood pressure & heart ...................dont ask me I'm just a guinea pig here

I now find that by 2 pm in the afternoon I'm totally shattered , where as before I was just tired and wobbly on my feet , dropping stuff, spilling drink from mugs etc, now I fall 'up the stairs' as well as down , driving ......... well the only thing at this time I could drive with any confidence is my hubby mad with all the swaying and tripping up .............on things that aren't there

I'm determined to stick this out for at least another 5-7 days to give it a fair chance , then no one can say I didn't try my best.

I'm hoping soon to see this Migraine specaialist , my own doctor still cannot believe that my pots consultant sent me to see one when I dont have migraines.

What I get is something very different , if you have this and have been diagnosed , let me know will you...........right I get two things sometime together , but sometime ( mostly ) completely separately and not linked ( one doesn't set the other off)

1. A head pain at the front ( above both eyes) and slightly over the head, with such banging pain in time to my heart beats, BUT only when I lay down OR sit down..........when I stand up I can count 1,2,3,4,5, seconds and ...........GONE.

I then start to move and I want to be sick, over and over again a bit like motion sickness.

Lay or sit down, 1,2,3,4,5, head pain is back again just as bad.

2. Face /neck/arm pain ,this takes in my right eye, ear ,nose, teeth, neck, jaw, and sometimes shoulder and arm. It can go on for hours and is horrible no pain killers help , nothing masks it , BUT a shot or two of GTN helps as does laying down to rest ( heart , I know dont even say it )

I'm still feeling OK , my friends seem to marvel at the fact that after just 24-48 hours of such a shock I seem to be 'back to my normal lunacy' . which means I'm doing a grand 'cover up job here' .

I dont know about you all but having a lad of 15 and a hubby who's also unwell at times doesn't give me the right to make a big deal out of my condition , its unfair to make them feel guilty over my pain .

So keep it to yourselves , I'm not OK , I'm not 'bearing it well' 'I'm not my normal self, all fun and laughter' its just a dam good cover up by someone who's a pro at it after 35 years!................hey, bring on the Oscar award !!!!!

Well I'm now going to visit other places of interest on the WWW so I'm of on my magic carpet to far off lands with interesting people and wonderful scenery . Night , night or 'morning all' depending were you are in the world.

Willows.

[jenwclark]

I dont know about you all but having a lad of 15 and a hubby who's also unwell at times doesn't give me the right to make a big deal out of my condition , its unfair to make them feel guilty over my pain .

So keep it to yourselves , I'm not OK , I'm not 'bearing it well' 'I'm not my normal self, all fun and laughter' its just a dam good cover up by someone who's a pro at it after 35 years!................hey, bring on the Oscar award !!!!!

Heard and witnessed, guilt free. I'm new here, and this thread is part of what convinced me I wanted to be part of this community. I am so impressed by you and by the feedback you got here. Thank you for sharing your struggles, and for temporarily setting aside your Oscar-worthy happy face.

Spike