sad comment on British treatment...or lack of

[persephone]

Well folks, the title says it all. my pulse today has been down to 37, my bp up to 228/163 and I felt rotten- really miserbale all day, just out of sorts.

[dizzygirl]

Oh Persephone.. i can totally realte to what you are feeling and saying right now..

I wish that I had some great words of wisdow and advice for you.. but I can offer you my support and ear ready and willing to listen.. and to be a shoulder to cry on when you are blue.. or frustrated or angry.. or whatever..

about your Bp..I dont remeber.. are you On a Beta blocker?? I know BBs arent the cure all.. and sometimes that they dont help at all or help too much..

if you arent on one.. will your doc be willing to put you on one? do you have insurance to pay for it by chance??

It never ceases to amaze me how how horrible some of these supposide health care providers.. can just ingnore the facts and proof that is sitting right there in front of them.. I mean it is pretty obvious that there is a problem!!

EEEEEEEEERRRRRRRRRRRRRRRRRRRR... i feel so angry for you!!! and just want to slap these docs silly till they "get it"..

well persephone.. hang in there..

Linda

[taylortotmom]

It sounds like you have had a bad, bad day. Are you sure about the reading? That seems like a drastic change from what you said was your typical 90/60. If you are sure about the reading- I would definitely go to the hospital even if you think they will not do anything. That's an extreme reading and needs to be checked out. There might not be anything that can be done but it at least needs to be documented and watched by someone, somewhere. I know it is so hard when you feel like no one on earth gives a rip. But.... doctors have to priortize according to how life threatening something is and unfortunately since many of the symptoms of dysautonomia are not considered life threatening we are often put to the side. Having said this, your blood pressure change is in a different category and needs to be checked out- pronto. Keep us updated and good luck.

Carmen

PS How often have you taken your reading today? Has it stayed up or has it fluctuated?

[Laura]

Perse, I know I've probably asked this already, but have you been checked out for a pheochromocytoma (tumor of the adrenal gland)? You need to be tested when you are having an episode of high BP as your levels can fluctuate and result in false negatives. Some people with this have sustained high BP, others have episodic. I'm so concerned for you and I wish there was something more we could do to help. xo Laura

[persephone]

Sorry not to be jollier, guys.

[taylortotmom]

You have gone through a lot to get to University- now is not the time to give up. If you want it- it can and will happen. I know you want it, go back and read your posts. Your heart is set on school- don't let this illness keep you out if your truly are determined. Good luck!

Carmen

[yogini]

I agree with Carmen. I am not sure how often you are taking your BP or how many readings you had in the very high range. But, personally, if it is fluctuating, a couple of very high readings would be enough to send me to the ER.

In terms of meds, I am not sure what the starting dose for your beta blocker is, but 5 mg sounds really low. One idea might be to talk to your doctor about taking an extra dose on days when you get high BP. Also, I seem to remember that you were taking midodrine -- are you still taking it? If so, that could be contributing.

In terms of going to school, I hate to say this, but have you considered deferring for a semester or a year so that you can get more stable before you go?

Anyway, hope you feel better soon.

[dizzygirl]

Persephone...

hey i agree with carmen too.. about BP Medds and schooling..

If your BP stays up like that you definately need to get that checked out... and maybe a higher dose of BB's

Oh persephone please dont give up on school.. not now when you are so close to achieving your goals!!! and went through all that hard work to get to where you are now...where there is a will there is a way..

Please talk to us as much as you need to... we are here for you!!

[ariella]

Perse,

You've come so far with school. But your fluctuations really worry me, and the added strain of school may be really frustrating. I struggle with it all the time, I call it one step forward, two steps back. Is it possible to do at least some of it via distance learning (online casses and the such?) This is for your master's, right? There's a huge selection of masters programs from reputable universities online.

Please follow up with Laura's advice about checking the adrenals.

love, ariella

[persephone]

deleted cos I was on an insomnia rant- sorry everyone!

[Rita]

Persephone giving up is not you solution. Trying to make adifference is however. It takes alot of people to make the world go round and knowing your personality it is a shame there is not more like you. I have had trouble with my blood pressure going high , but mine went up while I was lying down 200/126 and would bottom and I would syncope when I stood up.

I am not sure what other meds you take, but sometimes meds can cause this. It is very dangerous for the bottom number to get above one hundred as this can bring on a stroke. This may also be caused by pain with me it was because I was having repeated migraines and imetrex wasn't working. They had to give me demoral and phenegren. After a week in the hospital they had to let me go home , because insurance was refusing to pay.

Evan though I went home I was still unable to get out of bed or walk on my own for quite sometime. So I guess you cen say ( I feel your frustration grrrrrrrrrrr!!!!!!!!!!!!! ) . Just don't give up the answer to our torture has to come eventually.

Always caring,

Rita s

[taylortotmom]

What is it you are wanting to accomplish at Oxford? What is your end goal and what will it take to make it happen? What specifically can help you make this happen? There are some things that unfortunately can't be changed: you are sick, you get substandard medical care, you have to rely on government healthcare which you state is horrible in the UK, you may not get the wheelchair you want, and your roomates may or may not be tolerate of your condition. Okay, those are things you can't do alot about. But what is in your control? Well... first, your opinion of yourself and your abilities. It sounds like you have a supportive family and that is definitely an asset. What else? Concentrating on what is negative will pull you down and keep you there. Not to say you don't have to deal with the bad, but what about the good? You have an opportunity to go to Oxford- and the financial aid came through- that in itself is awesome! Perspehone you need to vent big time right now- you've got a lot going on. Of course, the forum is one outlet but have you consider talking to someone professionally or do you have someone you could confide in as often as you need? Stress can eat you up from the inside out- don't let this happen to you. You have the potential to do great things with your life- but, it is going to have to be up to you. If you are truly feeling worthless- find someone, somewhere to tell and get help- there are many things that can be done to get you over this hump. Let me know what you decide- and good luck.

Carmen

[yogini]

I don't know how the NHS works, but can you see another GP or even a cardiologist? Also, is it possible to see a doctor outside of the NHS even if you don't have private insurance (i.e. paying out of your own pocket)?

It's hard for us in the US to offer you advice, because we don't know how the system works in the UK. I've been reading your posts over the past several months and you have had a lot of ups and downs, but you have stayed strong. You're very intelligent and I am sure you can figure out a way through this. Hang in there and stay positive!

I would not take courses online or give up on Oxford. You will make it there!

[Jenn202]

Hi Persephone - I was wondering if you have tried to contact Dr Grubbs Office? I keep thinking that it would help you be able to get some treatment going that could get you stabilized.

Would your Dr Be willing to work with dr Grubb... Maybe it would be worth a call?

Dont give up on your dreams... They can be accomplished. I have found that I am capable of things I want to do, I just have to find different ways to do them than a "regular" person... You will get there......

I think we have all been where you are mentally. .... I hope this episode passes soon for you.

[goldicedance]

Perse--you do have a lot on your plate--dealing with POTS, starting Oxford in the fall with lots of unknown. You need to vent, rant and rave...life is not fair! I know that that is a dumb question but have you ever checked your blood pressure machine with one in the doctor's office to be sure your machine is working properly? When you bp is high, you should stop the midodrine and see what happens. Perhaps you need to change your bp medication. I hope that you are feeling stronger! Perhaps you could benefit from a consultation with a specialist who treats people with chronic illness. You will be in my prayers...Lois

[MomtoGiuliana]

Persephone

It is terrible what you are going through. I do understand what you are going through emotionally. I have been at that level of hopelessness, as it took months to get a diagnosis and during that time I had very wide fluctuations in bp and heart rate on top of all kinds of other symptoms--and I was mother to a newborn. It was a frightening, depressing time of my life. I too had times when I wanted to give up--it was so hard. I had days where I cried much of the day (which doesn't help to bring bp down!)

I am so sorry that you have such poor management of your condition by your physicians--it is inexcusable.

PLEASE do not give up hope. For one thing, losing hope is detrimental to your physical (and mental) well-being. There is research out there now that actually shows that the mind/thinking can impact the course of illness--at least to some extent. Secondly, most POTS patients improve over time. You have every reason to expect improvement of your condition rather than worsening or remaining where you are now. This is according to my specialist who has studied this condition and treated hundreds of patients for a decade.

You will find a way through this!

Katherine

[persephone]

I'm sorry everyone- you all saw a pretty negative side to me this time--I'm going to delete my ranty comments from earlier, definitely made worse by total and utter lack of sleep!

But thanks for your words of support, everyone. After a massive crying session this morning, I am now back to my old self. Catharsis and all that...

love you all! x x

[taylortotmom]

Don't apologize for legitimate feelings.

Carmen

[MomtoGiuliana]

I agree completely. There is no need to apologize!

[MightyMouse]

You know what? The state of medicine here in the US is not that far ahead. Most of us who aren't at the epicenter of ans docs end up choosing ot stay home in a crisis too... I've done it. I didn't go to the hospital when I busted my scalp and skull earlier this year--reason 1) can't do anything for a skull fracture and reason 2) I didn't want to deal with explaining what's wrong with me in the ER and having them treat me horribly or like a psych patient.

Both sides of the pond have a long way to go with regard to adequate treatment. Nina

[Guest Julia59]

Persephone,

Don't apoligize----that's what we are here for----- to support you.

You have given your fair share of support to all of us---so don't be so hard on yourself. I too have deleted some of my posts before. Sometimes i'll post things in a really bad state of mind---then after I get my faculties i'll read it and think----"what have I just posted?". Still---we all understand---even when we are going through the craziest of times, we have all been there.

Uggg----what the heck are we going to do with all those dumb nimrods out there in the medical field .

I just took my son to the ER today with a high fever/aches---and pretty tachy---at 130 BMP---------------The ER Doc took a look in his ears---then took a throat culture. Came back into the room and said he had a respiratory infection---VIRAL----and he never listened to his chest once. Told the nurse to clean some excess wax out of his ears............................Apparently he has odd shaped ear canals, and the wax gets impacted.

They sent him home with no meds----and a HR still at 130 bpm. At least the Doc did say my sons BP should be monitored more as it is high a lot of the time. He suggested my son find a good PCP and get a good workup------- Ha----what a joke----where and the heck is a good PCP--------- I know there must be one out there somewhere...............

You hang in there and get that blood pressure looked at more closely. I did not see your full posting---I just read it tonight.

Sending you big hugs tonight.

Julie :0)

[persephone]

Thanks guys!

Bg love to all

[Sunfish]

p-

i posted to you about the BP readings in another thread where you'd mentioned it, and missed all but your original post in this thread, but just wanted to send a (((HUG))) your way. i do know what it feels to be "stuck" in terms of treatment resources & it's not fun at all. and scary. and this is a place you can come to vent. so hang in there & as hopeless as things may seem in terms of new avenues for treatment, etc and no matter hard it is to do so, you MUST keep trying to explore new avenues...you owe it to yourself.

hang in there,

:-)melissa