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Cycles of Vertigo????
Ok forum family need some advice. I am at my third day of these cycles of dizziness, this week. Last week it was the quitting steroids that made me feel like that. Could I still be having consequences of the abrupt stop of the steroids over a week ago? I am taking them religiously again and am happy to report the swelling keeps going down more and more. I thought at first it was a natural gas leak, it flooded here and knocked my water heater out. Well got that fixed and still having it.
It is so weird, they start in the mid-morning when it is starting to get hot outside so I avoid it as much as I can. I have to focus on one object and not move my head at all otherwise the room is spinning. This afternoon I had a bad spell with it and I started having hot flushes, nausea, confusion and I was so tired after it was over I slept for several hours. That is the one consistent thing, exhaustion afterwards the spell is over.
My husband was concerned about the confusion like episodes with it. He says my eyes are bugging out when its happening. I just told him it was the hyperthyroidism thing making me feel like this but I really don't know.
Any suggestions?
Love To All,
Ada
It is so weird, they start in the mid-morning when it is starting to get hot outside so I avoid it as much as I can. I have to focus on one object and not move my head at all otherwise the room is spinning. This afternoon I had a bad spell with it and I started having hot flushes, nausea, confusion and I was so tired after it was over I slept for several hours. That is the one consistent thing, exhaustion afterwards the spell is over.
My husband was concerned about the confusion like episodes with it. He says my eyes are bugging out when its happening. I just told him it was the hyperthyroidism thing making me feel like this but I really don't know.
Any suggestions?
Love To All,
Ada
There are many diseases for which people take lifelong steroids. You just have to respect them and watch out of the side effects. And the methotrexate may well allow you to take less of the steroids.
I'm glad there is an endocrinologist available to you!
Quix
I'm glad there is an endocrinologist available to you!
Quix
I agree that an endo is a better choice for me for this. I will call and see if I can get a referral. It shouldn't be much of a problem, there is one at her old office. I'm really afraid of going off the steroids though after what has happened. I have researched to death what the next line of treatment could be and I guess they would have no excuse to deny me the methotrexate anymore. Its just the steroids seem to be working, my swelling is going down and I almost look human again.
Love Ya,
Ada
Love Ya,
Ada
I have another thought. Since your current doctor doesn't seem to know much about this aspect of steroids (Isn't she a rheumatologist?) I think you should request a referral to an endocrinologist who could devise a truly educated steroid-taper for you (I certainly can't) and also deal with the thyroid thing. A second opinion would not be a bad idea.
In reality, most doctors and patients get away with the use of repeated steroids and rarely or never see what you went through. I treated severe asthma all the time and never saw it in 23 years.
I understand that the doctor was moving her offices. However, part of her responsibility is to ensure that the transition does not interrupt patient care and that her front desk is performing as it should. Even if this means checking in with them regularly (more than once a day) for any messages. And, she knows, you were at death's door. She should be calling you to see how you are doing! That's what I did.
Yeah, I'm really hot on the idea of you seeing an endo for this.
Quix
In reality, most doctors and patients get away with the use of repeated steroids and rarely or never see what you went through. I treated severe asthma all the time and never saw it in 23 years.
I understand that the doctor was moving her offices. However, part of her responsibility is to ensure that the transition does not interrupt patient care and that her front desk is performing as it should. Even if this means checking in with them regularly (more than once a day) for any messages. And, she knows, you were at death's door. She should be calling you to see how you are doing! That's what I did.
Yeah, I'm really hot on the idea of you seeing an endo for this.
Quix
Quix-you never cease to amaze me!!! When you say things, it makes total sense to me. I don't know why I have select hearing but I do know she did not explain this to me as you have. I feel like she is more worried about my thyroid than this whole mess with my adrenal insufficiency.
Wow, a whole year? I guess steroids really is the double edged knife. I will get a bracelet and wear it, I do carry a medical card in my purse but wearing a bracelet seems safer, sometimes I don't always carry my purse. I am going to start Boniva or Fosamax, pretty soon. because it sounds like I will be on the steroids for a long time. If it works it works.
Thank you all for the wealth of information and never ending support.
Love You All,
Ada
Wow, a whole year? I guess steroids really is the double edged knife. I will get a bracelet and wear it, I do carry a medical card in my purse but wearing a bracelet seems safer, sometimes I don't always carry my purse. I am going to start Boniva or Fosamax, pretty soon. because it sounds like I will be on the steroids for a long time. If it works it works.
Thank you all for the wealth of information and never ending support.
Love You All,
Ada
I suspect that part of Ada's dizziness is the very low blood pressure seen with adrenal insufficiency. That is also the fatigue and the weakness. Combined with the electrolyte imbalance that also gives more weakness and nausea. Then the dizziness results in more nausea. It really is a vicious cycle.
I believe Ada was still in renal insufficiency. The dose of prednisone she was placed on after the hospital was less than the dose she had tapered to before stopping abruptly. When the steroid blast from the ER wore off about mid-week, the 20mg just wasn't enough. The body needs way more steroid when under stress and the adrenal crisis was a HUGE stressor. So, she wasn't on enough after the ER to keep her out of danger. That's why doubling up on the steroid dose is making her feel better.
It may still not be enough, but we will see. Ada, if you become physically stressed by anything else (illness, injury, more symptoms) you will need to go back up even farther on the steroid dose. I don't know what your doc was thinking. You can't treat the adrenal crisis and then just go immediately back to tapering on down. At this point the only safe thing is a little too much steroid and a slow taper.
Be sure to carry with you at all times a card that you are steroid dependent. And you need a pendant or bracelet like the Med Alert ones, that state you are "Steroid Dependent." You will be in need of extra steroids in times of physical stress for at least a year (Yes, a year) after you get off the steroids. That year starts over every time you get a course of them. Tell all family members of this so they know, too, in case (God forbid) you were in an accident or something or found unconscious. Carrying this is as important as it would be if you had a "fatal peanut allergy" or fatal bee-sting allergy."
This year business does NOT apply to everyone who gets a course of steroids unless it is in excess of a couple weeks or repeated longer courses in a year.
Quix
I believe Ada was still in renal insufficiency. The dose of prednisone she was placed on after the hospital was less than the dose she had tapered to before stopping abruptly. When the steroid blast from the ER wore off about mid-week, the 20mg just wasn't enough. The body needs way more steroid when under stress and the adrenal crisis was a HUGE stressor. So, she wasn't on enough after the ER to keep her out of danger. That's why doubling up on the steroid dose is making her feel better.
It may still not be enough, but we will see. Ada, if you become physically stressed by anything else (illness, injury, more symptoms) you will need to go back up even farther on the steroid dose. I don't know what your doc was thinking. You can't treat the adrenal crisis and then just go immediately back to tapering on down. At this point the only safe thing is a little too much steroid and a slow taper.
Be sure to carry with you at all times a card that you are steroid dependent. And you need a pendant or bracelet like the Med Alert ones, that state you are "Steroid Dependent." You will be in need of extra steroids in times of physical stress for at least a year (Yes, a year) after you get off the steroids. That year starts over every time you get a course of them. Tell all family members of this so they know, too, in case (God forbid) you were in an accident or something or found unconscious. Carrying this is as important as it would be if you had a "fatal peanut allergy" or fatal bee-sting allergy."
This year business does NOT apply to everyone who gets a course of steroids unless it is in excess of a couple weeks or repeated longer courses in a year.
Quix
Firstly, I'm glad your doc called back. Secondly, I'll agree with the general concensus that your episodes of vertigo just "aren't right." Thirdly, I've had terrible vertigo for years, which makes me sensitive to light and sound. I have found that it helps to get a cold, wet compress for your head and just lay down in the dark, or soft light for a while and just breathe. I hope it doesn't continue, but if it does, just something you might try, since it's helped me. /me shrugs
Good luck with everything. :-)
-tree
Good luck with everything. :-)
-tree
Ok, finally got a call back!!! At least this excuse is forgiveable (I think). She is in the middle of moving to her new location and apparently she hasn't been getting any of her msg's. She apologized over and over for that. So at this time, I feel I need to forgive her. She is a brilliant Dr even though her old office people are inept at best.
My thyroid is completely out of whack, I have to get an ultrasound done of my thyroid gland, she would of preferred the scan but because of the contrast I had in an earlier test I am unable to have it done :( This might be contributing to me feeling like major c-rap but not totally. With what happened almost two weeks ago and current symptoms, I am to double up on the steroids for now and see if it improves. I did it yesterday and I did feel better.
Thank you all for all the support, I sure have been honked off by all of this.
Love to All,
Ada
My thyroid is completely out of whack, I have to get an ultrasound done of my thyroid gland, she would of preferred the scan but because of the contrast I had in an earlier test I am unable to have it done :( This might be contributing to me feeling like major c-rap but not totally. With what happened almost two weeks ago and current symptoms, I am to double up on the steroids for now and see if it improves. I did it yesterday and I did feel better.
Thank you all for all the support, I sure have been honked off by all of this.
Love to All,
Ada
I get the impression that all doctors are way overworked. And the ones that aren't - well, there's a reason why they aren't busy.
Unfortunately, you've got to be assertive about your own treatment. And when I say assertive, I mean call them up, and when they don't call back, call them up again, and when they don't call back, etc... I went through this to get my neuro-psych. I had called them three times before I got a call back from the nurse - they had been sitting on my paperwork for a month and a half.
And going to your PCP for relief of symptoms isn't a bad idea. Next time I have a wittle bitty problem, I'm going to call up the clinic rather than try and schedule a neuro appt.
Unfortunately, you've got to be assertive about your own treatment. And when I say assertive, I mean call them up, and when they don't call back, call them up again, and when they don't call back, etc... I went through this to get my neuro-psych. I had called them three times before I got a call back from the nurse - they had been sitting on my paperwork for a month and a half.
And going to your PCP for relief of symptoms isn't a bad idea. Next time I have a wittle bitty problem, I'm going to call up the clinic rather than try and schedule a neuro appt.
You are feeling OK, aren't you? I know that getting ticked off sometimes gives me energy, and that blasted doctor sure has been giving you plenty of fuel to fire your ticked off engine.
As others have said, would he treat his daughter this way, or his sister?
Thinking about you and wishing you well,
Kathy
As others have said, would he treat his daughter this way, or his sister?
Thinking about you and wishing you well,
Kathy
What an unnecesary ordeal this is for you. I too am surprised your doc has not returned your call yet for something so important. OK, maybe I'm naive, but like you I don't think it's unreasonable to expect a return call from a doctor.
I understand your emotions about this, but please try not to interpret this as rejection. My guess is that it's just another case of an overworked/disorganized/absentminded doc, as opposed to a true lack of desire to help you. This is a total assumption on my part as obviously I don't know your doc. I'm just trying to see it from another angle.
Most important, though...how are you feeling? I trust you haven't had a repeat episode as you are on the forum right now and not at the ER.
It sounds like a scary sensation, and I hope it does not return. But you know what to do if it does, right??
db
I understand your emotions about this, but please try not to interpret this as rejection. My guess is that it's just another case of an overworked/disorganized/absentminded doc, as opposed to a true lack of desire to help you. This is a total assumption on my part as obviously I don't know your doc. I'm just trying to see it from another angle.
Most important, though...how are you feeling? I trust you haven't had a repeat episode as you are on the forum right now and not at the ER.
It sounds like a scary sensation, and I hope it does not return. But you know what to do if it does, right??
db
Quix-I love that!!! That is cute, wouldn't that be a nice conversation piece? hehehe
Jens-When I was told to quit cold turkey for a test, I never in all my life had felt this c-rappy than I did when I had to go to the ER, I was completely out of it, and sick. And for awhile there I seriously felt I was going to die.
Still no call back, I am deeply disappointed by this lack of action on my Dr's part. I think I will be looking for a new Dr or just go back to my old, trustworthy PCP, who will answer my call without fail and who has never let me down. He doesn't know much about Stills but what the he-ll, at least he would give it his best shot. He stuck by me 100% when I was in LimboLand.
I just feel very disappointed and rejected.
All My Love,
Ada
Jens-When I was told to quit cold turkey for a test, I never in all my life had felt this c-rappy than I did when I had to go to the ER, I was completely out of it, and sick. And for awhile there I seriously felt I was going to die.
Still no call back, I am deeply disappointed by this lack of action on my Dr's part. I think I will be looking for a new Dr or just go back to my old, trustworthy PCP, who will answer my call without fail and who has never let me down. He doesn't know much about Stills but what the he-ll, at least he would give it his best shot. He stuck by me 100% when I was in LimboLand.
I just feel very disappointed and rejected.
All My Love,
Ada
I'm going to make a plaque to hang beside my front door on the porch.
Please Stay on the Mat.
Your Visit is Important to Us.
Your Knock Will be Answered in the Order It Was Received.
Quse the Muse
Please Stay on the Mat.
Your Visit is Important to Us.
Your Knock Will be Answered in the Order It Was Received.
Quse the Muse
Yup, the Wikipedia article says that adrenal insufficiency (addisonian crisis) is created by discontinuing corticosteroid therapy without tapering off.
Bleah! Now I know why they were so insistent about me taking the three a day, then the two a day, then the one a day... I did it religiously, and only experienced a little of the steroid-type side effects.
Bleah! Now I know why they were so insistent about me taking the three a day, then the two a day, then the one a day... I did it religiously, and only experienced a little of the steroid-type side effects.
I hear ya loud and clear, Sweetie. If it hadn't been for you getting me through that last spell, I don't know if I would be here today. "I, Ada hereby promise Quix, I will go to the ER immediately if these symptoms get worse." I promise.
Love,
Ada
Love,
Ada
I am going to repeat what I told Ada in a PM. Your symptoms are still those of adrenal insufficiency. It is quite possible that the steroids you got IV two weeks ago were sufficient until last Wednesday or so when they wore off and the dose of steroid you are on now is not. If the doctor does not call you back, then the next bout you have of dizziness, weakness and confusion - YOU GO STRAIGHT TO THE ER!!!
As for Meniere's. Yes, the symptoms are similar with the exception of confusion. However, it is rare to have daily episodes. Besides, we try not to invoke a second diagnosis when there is a good one staring us in the face.
Ada, ya'll hear me? (I can use "y'all" having grown up in Kansas)
Quix
As for Meniere's. Yes, the symptoms are similar with the exception of confusion. However, it is rare to have daily episodes. Besides, we try not to invoke a second diagnosis when there is a good one staring us in the face.
Ada, ya'll hear me? (I can use "y'all" having grown up in Kansas)
Quix
Well its 6pm here and no call..... Rena your so right about that I wasted all day by the phone and then nothing.....
Chicken was delicious, had to make some homemade gravy though, ummm, ummm good. I am stuffed like a turkey. :) Now I am getting sleepy....
Thanks all for always being here for me.
Love Ya Bunches,
Ada
Chicken was delicious, had to make some homemade gravy though, ummm, ummm good. I am stuffed like a turkey. :) Now I am getting sleepy....
Thanks all for always being here for me.
Love Ya Bunches,
Ada
Dang it, Ada, now I'm hungry and its only 3 pm here!
Hang in there, whirly girl, that doggone doctor will get back to you or we'll come storm her office!
I really love those lengthy voicemail messages, too. Oh, and on hold; "Your call is important to us..." If it was, they would answer the phone!
OK, I'm going to grab a granola bar while I plan my dinner.
Love,
Kathy
Hang in there, whirly girl, that doggone doctor will get back to you or we'll come storm her office!
I really love those lengthy voicemail messages, too. Oh, and on hold; "Your call is important to us..." If it was, they would answer the phone!
OK, I'm going to grab a granola bar while I plan my dinner.
Love,
Kathy
Well isn't that typical honey? You seriously were not expecting that I doctor would return your call when YOU wanted her to did you? You silly, silly, little girl!
Seriously, I would call 1st thing in the a.m. and keep calling...this dizzy thing is crazy and how can you pursue your career as a life guard when the pool won't stop spinning???
Loves ya,
Rena
Seriously, I would call 1st thing in the a.m. and keep calling...this dizzy thing is crazy and how can you pursue your career as a life guard when the pool won't stop spinning???
Loves ya,
Rena
Sounds like me!
I was having some bad vertigo last year with my flare, and numb lips too. Felt like I had some novocaine in them. The vertigo would get worse around 3:30 on the dot, like clockwork.
My neuro recommended an antihistamine for my vertigo. I asked him if benadryl would work, and he said yes. But no matter how much antihistamine I took, the vertigo during the middle of the day was just as bad.
Eventually it did go away. It took several months, but the intensity of it subsided, until today I only have a little twinge when I'm fatigued.
I was having some bad vertigo last year with my flare, and numb lips too. Felt like I had some novocaine in them. The vertigo would get worse around 3:30 on the dot, like clockwork.
My neuro recommended an antihistamine for my vertigo. I asked him if benadryl would work, and he said yes. But no matter how much antihistamine I took, the vertigo during the middle of the day was just as bad.
Eventually it did go away. It took several months, but the intensity of it subsided, until today I only have a little twinge when I'm fatigued.
Okay, I left another msg for the Dr to call me back. I guess I will be waiting until tommorrow. ugh, I am so inpatient. I think it is important enough for the Dr to call me back asap but I guess it isn't to them :( Oh well, I have some chicken in the oven and it smells delicious!!! I am going to eat like a pig and its all CJ's fault!!!! hehehe
Many Hugs,
Ada
Many Hugs,
Ada
I am an inpatient person, I am still waiting, waiting by the phone, will someone call me back please? I love the nurses line "If this is an emergency please hang up and dial 911", "If this is a refill request, please have your pharmacist fax the request to ***-***-****. "All calls are answered in the order they are recieved", "Someone should get back to you by 4pm if your call was made before 1pm." "If this is for Dr. blah-blah, please press 1 now," and so forth. It is like a three minute long voicemail and then you get to leave a msg!!! How hard is it to write it down and give it to the Dr? AGH!!!!!
It sounds like labyrinthitis to me, but as i said im not a med, and you cant see menieres or laby...the only thing that they would be able to see would be the eardrum inflamation, sometimes puss will come out of the ear if the pressure bursts the eardrum. but the eardrum can heal if its a small inner ear infection, an mri scan can show up mens or acoustic N, (tumor on ear vestibles) but dont quote me i'm racking my brain now to remember stuff
Hugs
CJ :)
Hugs
CJ :)
My hearing is ok. Because of my recent vision problems my hearing is acutally getting better. I get pain in my inner hears from time to though.
It was the dr. at the university of michigan that diagnosed the problem. There was a parade of students who all looked in my hears sot that they could see the disease.
I am not too bothered by it and mostly forget about it until something reminds me of the terrible vertigo; worst than I can describe.
It was the dr. at the university of michigan that diagnosed the problem. There was a parade of students who all looked in my hears sot that they could see the disease.
I am not too bothered by it and mostly forget about it until something reminds me of the terrible vertigo; worst than I can describe.
First of all I must say sorry for kind of hijacking your thread ((( hugs))) the numb lips is indicative of diabetes and thyroid, but you should get blood tests done again, my guess about MS is that you can get numb bits anywhere! but they stay in the same areas. but im not medic and am just posting as friend, tinnitis can be swooshing in the ears, vibrating,high whistles, low noise anything really...and you may get breaks from it
hope this helps a bit
hugs
CJ :)
hope this helps a bit
hugs
CJ :)
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