:( useless doctors .. anyone interested in a drug trade

I went to the doctors today as I'd decided I'd try insisting that he allow me to try something to help the POTS, its ridiculous that I so often collapse when I go out and that Im not being treated for it.
Im also NEEDING something for the insomina so really wanted to get a script for melatonin (something i used to be on when i had another doctor).

I got copies the great POTS info from John Hopkins University along with also with the info on POTS from the American CFS association which states that about 70% of those who have CFS also have POTS, as I thought with these things, maybe this time, I'd be able to get my doctor to listen to me. This doctor hasnt listened to me when Ive given him the fact that a previous doctor did diagnose me with POTS.

Do you think he listened to me even with the great info i took??? NOPE!! He just ended up making me go to tears due to what he said.

He told me that even if he reads what I took, he will not treat me in any way at all for the POTS as he hasnt been trained in it. So i then begged him to help me find someone who will treat me then.. and he just tells me he knows of no one. He then proceded to tell me that he also wasnt going to pay any attention to the info I took in to him due to it being from America.

I then tried to bring up that I'd previously been diagnosed with POTS by another GP and he just says he wont accept any diagnoses from any other GPs and that he only will accept them from a specialist. Then he goes on and says something about this being a new problem Im bringing to him... when in fact Ive gone on about it at times the whole (over 6mths) Ive been seeing him. He NEVER listens to me.

So anyway.. after my latest attempt to deal with my doctor, I ended up in tears as I dont know how on earth to get him to help me. Then he just goes on about how I need to see a psychriastrist to help me and that I need to deal with psychriastrist issues first.

:( He dont understand that if i was being treated better by people, i WOULDNT then need a psychriastrist!! Having doctors who do not listen at all, who ignore the fact that I collapse (sometimes going unconscious) when i try to do things.. well that is sooooo upsetting. The POTS too is probably also adding to my anxiety.. and maybe the lack of blood to my brain is also adding to my mood swing stuff and partly responsible.

He says I need to be patient in getting the help I need... Well come on.. Its been THIRTEEN YEARS in which ive been trying to get the right medical help!!! I feel like Im living in a third world country as far as getting any kind of treatment for my conditions go, Im practically getting that level of help.. ALMOST NIL!!

Patience??? How can I be accused of having no patience after all this time.. Yeah i got upset at doctor today for his treatment or rather no treatment one could say.. Ive BEEN soo patient. (Im now trying to fight that depressed feel I get from my situation and the invalidation I get from those supposed to help me). I see others getting treatment on this site and it gets me down that i cant get treatment and all the treatment i get is off my own back eg getting drugs from others who get them from their doctors.

Today i had another friend offer to fake an illness to try to get a drug from their doctor to give to me (sleeping pills).. but I told him, I just cant do that, I cant have someone fake an illness to get drugs for me to send to me. (If there is anyone at this site thou who is in Australia who wants to send me 2 or 3 sleeping pills of theres.. I'd be so glad to try them, I can post you back some B12 hydroxocobalamin injections in return. Im serious about this and doing a swap with someone.. Im desperate to get some good nights sleep!!).

Should CFS/ME patients be left to try to be drug trading to treat themselves.. NOOO We shouldnt be... but that is how ridiculous the whole situation is and we are just surviving however we can.
..........

I just finished reading about Theda Myint over in Western Australia.. poor thing, she's in a similar thou different situation I are in. No right treatment!! http://www.watoday.com.au/wa-news/theda-suicidal-as-inhome-treatment-refused-20100903-14to1.html (i was in her situation in past.. severe pain and no doctor that would help).

Comments

Is there any way at all to see a different doctor? That one sounds worse than useless. My partner here also had had terrible experiences with doctors. I think you have been more than patient. I've also had poor luck with getting medications, even with presenting articles from places like Stanford U and other prestigious institutions.
I hope you can get the melatonin.
 
I so sympathize with your frustration. About sleep: I live in a state that allows medical marijuana, thank god for that as it is the only way I get any sleep. I know this from many many nights of trying to sleep without it and getting a white night. I use an oil preparation, ingested. It is antiviral, antidepressant, and gives me a really good sleep without endangering my liver (most sleeping pills) or upsetting my hormones (melatonin is effective, but taken on a daily basis, it might do this).

I know this doesn't solve the POTS problem but may help: try a slant board 2x a day for 15 minutes. A dr. showed me this and I was surprised at how much it helped my energy level (POTS is connected to that). Test a slant board out for five minutes first, to be sure it doesn't make you weird.

I think Dr. Cheney is real good on the theory of POTS and how it works in CFS. I'm intending to write some articles on what I've heard but no brain for it now.
 
I'm really sorry to hear your frustration, Tania,

You MUST try to find another doctor. The doctor you have is useless (if he doesn't respond to your continual complaints).

I urge you not to swap medications (despite you being very knowledgable on your condition). If you did so & had an adverse reaction (without a Dr overseeing prescription meds), then you would have a big problem.

I remember once many years ago, being given two Valium in the ER dept for (can't remember, probably a severe attack of excruciating pain). At that time, it really calmed me down & I slept better that night. My doctor has given me a couple of prescriptions of valium after I told him about this. A box of valium lasts me many years as I only take one (when nothing else works).

If I'm really agitated & upset or seething with anger, a valium does wonders.

Haven't taken one for ages (probably over a year now).

But I really do urge you to find another Dr.

Perhaps you could say which town you live in & one of us Aussies might know of a doctor in your area.

My GP is brilliant (in Melbourne), mainly in the way he listens & is willing to refer me on to specialists or people who have more knowledge on the particular symptom at that time. He is also very supportive of my being pro-active & needing to understand tests, scans etc.

Basically, he's exactly what I need. Someone to talk to & discuss my condition. My GP understands my frustrations, as well as being open to alternative or natural remedies. If you don't have a Dr who listens & is willing to thrash out theories & the latest news, you will continue to feel "invisible" and cheated.
 
The drugs used to treat POTS would only make you worse in other ways. They can wreck your heart and your kidneys. There are nutritional ways you can make yourself better. You don't have to be as sick. You need real salt and no garlic in your diet. No hot showers or hot baths, only cold to slightly warm. You can get your blood pressure up there and be better than you are now.

I'm sorry you had a crappy experience with the doc. We have all been there. And the truth is, you are going to have to treat yourself and that's it. POTS is not curable, but it is treatable. You can be better than you are.
 
Tania it is incredible th at even now we are still faced with uncaring unknowleageable Doctors.

I am trying to get treatment for pots too and am waiting for my endocrinologist to prescribe midodrine for me. He said he would but i'm still waiting. He said he would ring me to talk further and send me a script but he hasn't. I will keep ringing his office till he does.

I was going to try a clinical physician, a heart specialist, or even a bood pressure specialist (urologist) if my endo couldn't help me. A clinical physician diagnosed me 20 years ago following a 24hr heart monitor test.

I live on the far north coast of NSW but have to travel to see specialists. Except my endo who diagnosed my Addisons Disease. He comes to my town monthly thank goodness.

Don't give up, there are Docs who treat this.

Anne
 
I am treated for POTs by a cardiologist at the Cleveland Clinic - here is what she recommends for me - a beta-blocker (inderal, but I no longer take it due to breathing issues), 3-5 grams of salt a day with plenty of water, compression knee socks/stockings, walking the treadmill slowly daily to keep from deconditioning.

Slty things: Organic chicken soup, V-8 (not the low sodium one), real salt (like Celtic sea salt - provides more minerals) - avoiding big hits of potassium (like in carrot juice) especially when you are weak or dehydrated. Staying cool, lying flat or with legs up helps.

I hope this helps a bit.

God Bless,

Elisabeth
 
Elisa;bt3084 said:
I am treated for POTs by a cardiologist at the Cleveland Clinic - here is what she recommends for me - a beta-blocker (inderal, but I no longer take it due to breathing issues), 3-5 grams of salt a day with plenty of water, compression knee socks/stockings, walking the treadmill slowly daily to keep from deconditioning.

Slty things: Organic chicken soup, V-8 (not the low sodium one), real salt (like Celtic sea salt - provides more minerals) - avoiding big hits of potassium (like in carrot juice) especially when you are weak or dehydrated. Staying cool, lying flat or with legs up helps.

I hope this helps a bit.

God Bless,

Elisabeth
Also look into your aldosterone hormone levels and adrenals.
 
Elisa;bt3086 said:
The following is a listing of Physicians with knowledge and specialty in the diagnosis and medical treatment of Dysautonomia....It's quite good from my experience.

http://www.ndrf.org/physicia.htm

Resources in the US and outside!
Thanks for trying to help, I got excited there for a moment but on clicking the "Other Countries" as im in Australia, nothing at all is listed for my country.

When i got sent to a heart specialist.. she didnt even know what Postural Orthostatic Tachycardia Syndrome was.
I do currently treat my POTS with eatting LOTS of salt and drinking HEAPS of sports drinks (up to 28 glasses per day). If i dont do that, I can be very very bad. Drinking this much makes it EXTREMELY hard when going out as Im going to toilet sometimes every 20 mins. (I had to go THREE times today just while waiting for an appointment).

Im not at all deconditioned and very aware of my posture at all times due to the POTS so i dont end up suddenly fainting. Today i was sitting at specialists appointment with feet up on a chair (which people thought was rude but it something I needed to do). I also avoid triggering things.. and do try to keep cool. (i was going to buy like a cooling suit but havent as yet.. i was worried that the synthetic which contains what you freeze.. I may react to due to the MCS).

Other then support stockings (which i havent as yet tried, thank you for the suggestion, I do need to look into trying that) i really dont know what else I could try (other then meds) then what I already do do.

The POTS symptom of my CFS/ME is currently one of my top three worst symptom (the other being the insomina and mood swings.. the mood swings coud be POTS related), so if i could help the POTS, I would be far more able.

My Adrenals dont work right... and my 24 hr cortisol readings in the past have been out of the normal range (too low at 48.. normal cortisol is 50-350)... but no doctor is worried about that either. (even thou i have addison's running in my family and actually have the genotype for it). I also have no testosterone.. and see a gyno for that and have testosterone implant (which actually hasnt helped). My other hormones are in wrong ratios. Basically my hormonal system is screwed.
 
Anne P;bt3083 said:
I am trying to get treatment for pots too and am waiting for my endocrinologist to prescribe midodrine for me. He said he would but i'm still waiting. He said he would ring me to talk further and send me a script but he hasn't. I will keep ringing his office till he does.

I was going to try a clinical physician, a heart specialist, or even a bood pressure specialist (urologist) if my endo couldn't help me. A clinical physician diagnosed me 20 years ago following a 24hr heart monitor test.

I live on the far north coast of NSW but have to travel to see specialists. Except my endo who diagnosed my Addisons Disease. He comes to my town monthly thank goodness.

Don't give up, there are Docs who treat this.

Anne
hi Anne.. could you share more with me about Addisons.. at what stage of low cortisol does one end up getting an Addisons disease diagnoses. That is something I do need to watch and I cant trust the doctor there either!! He ignores my out of range low cortisol reading. (and my cortisol also dont go up with stimuli).

Heart doctors dont always know about POTS at all due to it being an autonomic nervous system dysfunction rather then an actual heart issue or defect. The ANS causes the tachycardia but heart healthy. I have to travel to to see my specialists, the whole thing is difficult as I dont drive and cant case buses due to the MCS. I'd be so lost without some specialists currently trying to help me even if my own doctor doesnt. At least the specialists are trying things in their fields. Unfortunately my ME/CFS specialist dont have insurance so cant prescribe drugs.

I do hope your POTS is sorted out soon. Best luck!
 
Carrigon;bt3082 said:
The drugs used to treat POTS would only make you worse in other ways. They can wreck your heart and your kidneys. There are nutritional ways you can make yourself better. You don't have to be as sick. You need real salt and no garlic in your diet. No hot showers or hot baths, only cold to slightly warm. You can get your blood pressure up there and be better than you are now.

I'm sorry you had a crappy experience with the doc. We have all been there. And the truth is, you are going to have to treat yourself and that's it. POTS is not curable, but it is treatable. You can be better than you are.
nods.. i do understand POTS isnt curable.. i'd just like to have it treated properly so its not playing such a havoc in my life.

Other then taking salt and avoiding garlic (garlic in my case actually dont seem to make the POTS worst and it dont improve at all when I dont have garlic).. what other nutritional things to help POTS is there??? I already take heaps of salt.

I dont have NMH with the POTS.. and instead have extremely disregulated BP.. which does go super high over 160/130 when standing (but low at night when Im asleep). Its what my body is doing to try to stop the POTS when Im standing.

(which is another thing my doctor dont realise and Im not being treated for!).. a specialist said it was due to autonomic nervous system dysfunction my BP is dysregulated badly and as i was part of a study being done by that specialist.. he just insisted I tell my doctor about the issue and would never write me a letter to take to my doctor about it). That specialist also didnt suggest anything for the extreme BP swings I have.. I think he actually didnt know how to help me or where to send me.

I chatted to someone online only a few weeks back who has the same issue.. and due to this same dysregulated BP as i have, he has now dystolic heart failure due to it :( .. so i know from what Ive researched and also from what others who have this issue have said.. Im at very real risk of heart damage due to it. (on top of that.. all my family including my mum, gets heart issues even the healthy weight, non smokers so Im at extreme risk of heart attacks etc due to my genetics.. but im still taking salt due to the POTS.. shrugs.. no idea what else i should do).

Anyway.. if you have any more nutritional ideas for the type of POTS i have (with the widely swinging BP) please let me know. thanks
 
Victoria and the others.. Im in Strathalbyn.. country SA but are awaiting to get priority government housing in the city due to my medical stuff. It is living in country which is making things a huge issue. We only have two different doctors surgeries here.. and one of those has only a couple of doctors. Being country doctors, they are soo not up with the times!!

There are two reasonable lady doctors here.. but they deal with all the pregnant women of the town and take three and a half weeks to get in to when one needs to see one of them. So not really suitable for someone like me who has so many medical issues that im going to the GP about once every two weeks (sometimes more) and often need to get in to see a doctor well before that kind of wait.

Several other doctors in my town have told me that they wont take me on a patient as my case is too complex for them (after stuffing up and them ringing ambulance as my symptoms were so severe what they were seeing, that they wouldnt believe it was CFS/ME).
Before that happened and i decided to try again.. I gave up on the doctors here for many many years.. as I went to doctor to doctor only to be told they couldnt help me in anyway at all and to just go home as they cant do anything at all for CFS/ME. (i went home and crashed for 9mths to the point my children had to be my carers as i couldnt walk). So i have quite a bad history with doctors here.. thing is I cant drive and need to go to doctors so much.. so NEED a local doctor, but there just isnt one suitable.

I did recently catch a taxi back from the hospital (city) to my place and it was over $115 ONE WAY!

The whole situation often depresses me.. as i then just have to put up with bad treatment of no treatment.

There is a CFS/ME GP apparently in Stirling (which would be one hrs drive in total) but she isnt taking on any new patients so i cant see her. (Ones with CFS/ME are travelling about 3 hrs ONE WAY to go and see her.. 6hrs drive (ive chatted to patients of hers).. I live within reasonable distance drive of her.. but cant go to her due to her not wanting to take on anyone new as shes too busy with other CFS/ME patients.. its frustrating.). Cant even get onto her waiting list!
......

Right now im thinking about writing to the government health dept. or something about all this :( . Its wrong we cant get treatment.
 
Yes, the garlic does affect it. It can trigger a POTS attack up to 48 hours after you eat something with it in there. So you might not think it's hurting you, but it is. Also, nitrates in your diet will do the same thing. Nitrates lower blood pressure and were actually used as a blood pressure medication. So you if you eat anything like sliced meats and such that have it in there, you will make yourself far worse.

You can try licorice, that will help raise the pressure. Also, pseudophedrine, the OTC stuff for sinuses, it raises blood pressure.
 
taniaaust1;bt3089 said:
hi Anne.. could you share more with me about Addisons.. at what stage of low cortisol does one end up getting an Addisons disease diagnoses.

Hi Tania,

I have secondary Addisons (austoimmune) due to my pituitary clapping out and therefore my adrenal gland. I didn't suspect it at all but my endo decided to test for it. I had had month long periods of vomiting for no reason with weight loss over a couple of years, and extreme fatigue but no darkening pigmentation of my skin. I thought it was just the ME?CFS getting even worse.

The definitive and only test for addisons disease (adrenal insufficiency) is the 'ATCH Stimulation Test'. (is that what you mean by stimuli?) An injection of synthetic pituitary ACTH hormone is given and blood tests are done an hour later to check plasma cortisol. My result was 6 or 8, which is almost non existant. Normal levels are over 170 nmol/L and continue to increase up to 690nmol/L.

There is then also a longer test done over several hours. Any other cortisol tests are invalid for diagnosis. I don't know whether a GP can order this test or only an endocrinologist. Most GP's don't have the knowledge the diagnose and treat Addisons.

<That is something I do need to watch and I cant trust the doctor there either!! He ignores my out of range low cortisol reading. (and my cortisol also dont go up with stimuli).>

If your levels didn't go up after the stimulation test I would get a referrral asap to an endocrinologist. This is a life threatening disease. I take cortisone daily to keep me alive. I went into crisis a couple of years ago and almost died in the hospital emergency dept because I had a tummy bug and couldn't keep down my oral cortisone.

www.addisons.org.au
www.addisons.org.uk (excellent information there)
www.wikipedia.org/wiki.Addison's_disease


Best wishes Anne
 
Cloud, I know of a number in Australia who are CFS/FM patients who also have Addisons Disease which the Doctors call adrenal insufficiency. You may be thinking of something called adrenal fatigue which could possibly lead to adrenal insufficiency (Addisons) over time but often not. It is essential to have the only test which will determine the cortisol level and that is the ACTH stimulation test. A 24 hr urine cortisole or saliva test is useless to find out ones true cortisol status as the cortisol levels change throughout the day.

I am on the correct treatment thanks. Once the adrenal gland has entirely stopped working and not producing the cortisol and 30 hormones it used to, there is only one treatment and that is one of several forms of cortisone. Sometimes people add things to supplement their low DHEA or growth hormone levels.etc:

thanks Anne
 
Hi Tania,

I'm in Western Oz, so can sympathize with you about ignorant Aussie doctors. I imagine you have it even worse being in a rural area and having even fewer options! As far as I can see about the best you can do Dr-wise in this country is get someone who believes that you are sick and at least treats the symptoms. I don't think even the good ones understand ME/CFS much.
I have found that you have to word things quite strongly (though you may run the risk of perceived as 'hysterical'). Wheras I used to say 'I'm having trouble sleeping' now I say 'I haven't slept for X weeks/months etc' sometimes they pay more attention that way.
Anyhoo, the real reason that I'm posting is to suggest that maybe try taking polaramine to help you sleep. It is an antihystamine that makes you drowsy, so it can help. I started taking it because I had a bad case of the itchies and couldn't sleep. I only take it if I really have to, but it has helped quite a few times.
I understand that you probably know all this already, but just thought I mention it, just incase.
Goodluck!
take care, ness
 
I don't know if this is a coincidence or not, and I have not officially been diagnosed with POTS, but I noticed that when I take my sinus medicine, I have less dizziness, nausea and pounding heart when I stand up after sitting for long periods. I take Psuedephedrine Hydochloride. (The stuff you have to ask the pharmacist for, not the over the counter.) I did some looking on the internet and found out that it thins the blood vessels--not just in the sinuses, but all over the body. I did some more looking and found out that it HAS been used to treat POTS. Some days I take 2 of the 12 hour pills even though this is one more then recommended. I also drink vitamin water with caffeine and guarana. When I combine these things, I feel better than usual. As far as I know, Psuedophedrine Hydrochloride does not hurt the kidneys or heart. I have three sinus cavities and have had to take it off and on for over 20 years. I have not had any problems. Maybe it could be something worth trying that you would not have to ask a jerky doctor for.
 

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