brethor9

Hang in there Tinks!!! You can get through it.....you are strong!! I also have been having a bad 1st week of school with my little guy....lord the meltdowns!! PM me when you can and we can chat..

Take Care...big hugs!

Bren

Hi Comet

Unfortunately you have to be referred to see Dr. Morillo in Hamilton. I think I waited between 3-4mnths to get in to see them initially. I don't blame you it is hard just waiting and waiting. Keep on your Dr's office!!

Bren

Hi Ernie

I love Montreal.....It's a beautiful city!

I actually see a new Dr at Hamilton Hospital that is working along side Dr Morillo. His name is Dr. Guzzman and he is very kind, understanding and thorough. They were actually quite accomodating for my appointments as I live almost 4 hrs away so I can sympathize with the long drive. On my first vist they did actually do the TTT and told me the results right after the test and I was started on meds the same day. My 2nd visit they did the catecholamine tests and prescribed more meds. Maybe with the addition of a new Dr they are able to schedule more appropriately for out of town patients. I would call them and explain your situation and see what they are able to do for you if you dont get anywhere on Monday.

Good luck Ernie! I really hope you and your son can get some answers and start getting on top of his illness. Its bad enough when we have to suffer this illness but my heart really goes out to the kids like your son!

Bren

I am so sorry Ernie!!! You just shouldnt have to put up with that kind of attitude along with everything else!! Its so insulting! I live in Ontario, Canada. I have had a horrible time finding Dr's to take this diagnosis and symptoms seriously and if they havent heard of it they wont even give you the time of day!! I was seeing a neuro too who turned out to be a complete idiot so I stopped seeing her and moved on until I got the answers I wanted. Luckily, I have had great luck dealing with an auto specialist at Hamilton Hospital. Not sure where you live in Canada but if you are in Ontario or close by maybe you could go there for help.

Take good care and my blessings go out to you and yours and hope you can find some positive outcome!

Bren

I agree with Kayjay, Sue!! Don't put that stress on yourself......just chalk it up to Doctors that can't be bothered with dealing with patients who dont fit into neat little boxesand take longer than 15 mins to diagnose. Keep looking! You will find a Dr. to listen.....it took me almost 4 yrs after seeing multiple Dr's and specialists. Nobody knows your body better than you! keep going forward......I know I finally found the right specialist when my POTS Dr last week said "I want you to know none of this is in your head and you have no control over it!)Dr's like that do exist and you will find one! Stay Strong!!

Bren

Hi All

Just curious?? I have been battling this illness for almost 4 years now and was just recently diagnosed in late May. At my first appointment the specialist said I was looking at atleast 1 year of treatment. We are now into Sept and even on medication I am not seeing much improvement. I am just wondering how many of you were given a time frame for improvement? what was the time frame? Have you improved as expected? Have you surpassed the expected time frame for improvement and gotten worse or stayed the same? How Long?

I am just trying to get a sense of realistically how long most people are struggling until they see some kind of stabalization in their symptoms.

Thanks everyone!!

Bren

Hang in there Ginger! Sending hugs and positive vibes your way......

Bren

Thanks Guys!

exactly KatyBug! people really dont understand how I can have this crashing fatigue yet be drowning in NE and its hard for me to explain because honestly I dont understand it all myself.....its such a hard illness to figure out

Bren

Hi Lindsey

I think it is related to blood pooling in the stomach....as it was explained to me when we eat the body expends alot of energy to digest the food therefore alot of the blood volume is taken up in that process which can cause a drop in BP and a rise in HR. My specialist just recommended eating more smaller meals throught the day rather than 3 large ones so less energy and pooling would happen. I do actually find it makes a difference. Also, I have found staying away from eating a lot of carbs help as I think it uses more energy to break them down and they are high on the glycemic index which can affect your blood sugar levels. Hope this is helpful!

Bren

LOL even funnier story to share.....I was with my mom a couple weeks ago in the grocery store and tried 3-4 times to put my pin number and all the while feeling like a complete drunken idiot...just couldnt think through the fog....the cashier was getting very annoyed until my mom in a very kind voice said 'my daughter just got out of hospital and is very sick and her mind isnt working right quite yet' lol if I wasnt so embarrased with myself I would have died laughing..(thanks mom!)...the cashier didnt know what to say.....and bless my mom she still thinks this illness is just going to blow over one day.....

Hi Naomi!

Try not to beat yourself up too much! This happens to me all the time too along with forgetting how to spell, speak and think and you are right it is scary!. Some days I swear people think I am drunk!!! I asked my specialist about this and he said its all part of the dysautonomia and said hopefully over time with proper treatment it would be better.....here's hoping.....today I forgot the word cofee filter and had to settle for thingy that holds the coffee.....sigh:( hugs naomi!!

Bren

Hi

So here is a dumb question I am hoping someone can answer? It has been determined that I have very high levels of NE baseline and standing so why am I suffering from so much bone crushing fatigue all the time??? some weeks I can barely get off the couch!! Now I am supposed to start a beta blocker but worry that on the weeks I am crashing with fatigue I am barely going to be able to move

Can anyone explain the workings of NE....its waaay over my head !!

Thanks

Bren

Like Dani, I also have orthostatic intolerance and hyperadrenergic POTS.....kinda a couple of different things under the whole Dysautonomia umbrella

Bren

It will be interesting to see the final results...thanks Naomi for starting this!

Thanks everyone for all the feedback! I havent had any real resolution to my symptoms yet. Specialist has started me on Mestinon and a new beta blocker Metoprolol....I will let you know how I make out in the next while

Bren

lots of magnesium works great for me! I take 200 grams before bed and when I wake up I take 2 tablespoons of maalox....couple of hours later everything is moving.....I have tried every OTC treatment out there plus everything else under the sun for my very slow bowels. Magnesium is the only thing that helps in the slightest for me

Bren

I have a tie between being lightheaded and too much adrenaline....booo!!!

Bren

Hi all

So just recently I saw my auto specialist and he has decided to start me on Metoprolol(Toprol), Mestinon onto the Florinef I am already taking. Like many of you I am very weary of starting new meds and never have great reactions. I try to take as little medications as possible. I could use some guidance and advice?

I have been taking Florinef for about 3 months now...It has been helping a little but recently I have noticed I am gaining alot of weight on it...water retention and its making me hungry constantly.....I dont mind a little weight gain but my tiny frame cannot carry too much (2pds when I was born so I get alot of joint pain with too much)I have probably already gained 10 pds....it really wreaks havoc on my system even at a small dose (1/4 tab daily)

Anway, my question is what does mestinon do? does it work like Florinef? is weight gain a side effect also?

Toprol is a beta blocker...do they cause weight gain? has anyone taken any of these meds together and had good results?

My specialist wants me to try all these things but didnt really talk about what they are really for and the side effects to expect. All I know is he definately wants the beta blocker because my heart rate is in the 140's

Sorry for sounding so vague...I just dont want to be on a bunch of meds for nothing and have more side effects to boot. The florinef is bad enough

Thanks

Bren

Hey Dani!

Sorry you are having trouble with sleep! I can relate...havent had a good nights sleep for almost 4yrs....I just wanted to echo that magnesium has helped me a bit as a relaxant before bedtime...its not great but betterthan the horrible insomnia I was getting

Hugs

Bren

Hi All!

So recently I have come to the decision that I am still way too sick to be able to return to work. In fact the job I have is so chaotic and stressful that we have decided that I need to pursue another career avenue. I have decided to try and take some online courses in transcription when I start feeling a little better.

In the meantime I am having to apply for Canada Pension Disability. Has anyone on here applied for that and received it??? Can you give any advice? I have just received the filled out forms from my Dr and now getting ready to send them in but want to make sure I am not missing anything?

I could sure use some help and input please!!

Thanks

Bren

Good for you Mary!! Never give up.....if we all keep pushing maybe we will start to get more docs to pay attention! Keep us posted of your findings...

Hugs

Bren

thanks guys for the support! I always get freaked out when it comes to trying meds....like the rest of you I never have a normal reaction....but he said they are small doses and I am to stagger each drug so I know whats doing what. I hate the beta blockers but I guess with my heart rate getting worse I have no choice now atleast I know why I have been feeling so craptastic lately

I was kinda more bummed out this time too because there was no talk of going back to work anytime soon my first appointment I was told a year and I will be back on my feet...now I hear there's no timeline to getting well...so I am having to resign from my job and apply for Canada Pension.....sigh never thought I would be doing that at 37yrs...oh well...onwards and upwards I guess

Thanks for the kind replies!!

Bren

Hey Comet555

Thats ok for asking!! I know how frustrating it is to find a specialist in Ontario. I assume thats where you live? After 4 long years of struggles I finally made it to Dr. Morillo in May of this year. After they received the referral from my neuro I would say it took around 3 months to get in for testing. I had to go for testing 2x and just had my first follow-up yesterday. I see Dr. Juan Guzzman who is a lovely Dr who works alongside Dr. Morillo. Don't be surprised if you end up seeing him as I hear Dr. Morillo has to travel alot as he is the director..so is unable to be in the clinic as much as he would like to. They are an excellent group to deal with...very kind and understanding. In fact yesterday Dr. Guzzman was very adamant to make sure that I understood that this was not all in my head lol and that it is a bonafide illness.

So I hope you get an appt soon...keep after them and be persistent...they are understaffed and do their best but sometimes they cant always get back to you quickly so keep calling.

Good Luck!!! pm me if you would like if you have other questions

Bren

Hi All!!

So yesterday I had a follow up visit in Hamilton with my auto dr....he is now starting me on a new beta blocker (which I dont want!! I hate the side effects!!) but my heart rate was in the 140's when standing so he wasn't giving me an option not to at this point lol! The other drug he is starting me on is Mestinon? He said it is a medication that is supposed to settle the nerves down.....I was telling him how I have so many GI problems and I guess maybe this drug can help that??

So I am just looking for pros and cons, good things, bad things, side effects of both of these drugs?? Would love to hear from others who are currently taking these meds.

Thanks so much guys!!

Bren

Bless you! for trying to drum up interest on behalf of all POTS sufferers Issie!!! Gotta keep fighting the good fight.... One day we will have more light shine on this complicated illness.

Bren

Hi Tinks

I was diagnosed with Orthostatic Intolerance/ Postural Orthostatic Tachycardia Syndrome/ Hypovolemia/ Beta adregernic hypersensitivity/ elevated norepinephrine lying down and any change in position. I also suffer from migraines,nerve issues in my neck and spine which cause chronic back pain, irritable bowel syndrome, severe allergies, and the list goes on.

I sometimes wonder if after so many years of just putting more and more stress on my system didnt just cause a complete malfunction. Even the birth of my son was difficult (ended up as general anasthetic c-section)hysterctomy in 2008, gallbladder in Jan 2010...so maybe in the end it was just too much and my body made the decision to slow things down for me. Honestly, if it hadn't of I would have just kept pushing and pushing it so maybe down the line its a blessing in disguise??

Yes Tinks, I can definately relate to how exhausting it is taking care of an autistic child. My son also has sleep issues and when he wakes me in the middle of the night..the chaos in my body is horrible...massive adrenaline surges. I also have a husband with ADD so I really have my work cut out for me lol. How old is your child? are they high functioning autistic or aspergers?? If you dont mind me asking lol...