Can I ask is it normal to feel really ill .I feel so bad that I find it hard to get up.I try and do jobs but I shake violently and the sweat pours out of me and have to lie down.I have been to the GP several times.I had dbs two years ago.I take 75 of stalevo 6 times a day cant convince any body im not well.think I will be dead by xmas.
Feeling ill: Can I ask is it normal to feel... - Cure Parkinson's
Feeling ill
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libberty21
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sounds like you need another opinion from either another GP or Internal Medicine, Maybe another neuro.
Libberty21,
I am very sorry to hear that you are still not feeling well. Your previous posts were very distressing.
I would urge you to keep trying to get through to your physicians/surgeon and even the emergency department at a hospital. Someone has to listen to you or at least admit you to the hospital for observation. There is help out there.
Wishing you the best...
Hi Libberty21. What you are describing does not sound normal. Please see your neurologist, get a 2nd opinion or go to the emergency room. It might be helpful to take someone with you if someone you know is available. Another suggestion may be to join a support group. It usually helps to be able to talk to someone that may understand your situation. Keep us informed on how you are doing.
I sometimes also feel so ill that I think I am going to die. I feel weak, my heart races, I get breathless, and just that general feeling of being so ill that I am sure I can't take any more. I have had my heart checked out so it's not that but what was suggested for me was that it is when I get a sudden drop in blood pressure which I was told could give those symptoms plus a feeling that you might die. I have had several incidents when my blood pressure has become very low and my Consultant thinks it is the Requip that causes it so he has not increased it for a long time and has now started me on Azilect which I seem to tolerate. I still take Requip because I don't get those feelings all the time, only some days. So it may be worth seeing if your blood pressure isn't too low.
Hi
My wife is suffering from a similar feeling of being dreadfully unwell with the PD. Have you found anything that helps?
Hi
Have you had any success with the illness feeling - if so would you be able to let me know please?
I know exactly how you feel libberty,i,v been feeling like this for almost a year now,i never feel well i also have this eptopic heartbeat which is driving me mad its like a pronounced,heavy twitch in the chest,i,v had all the heart tests and even had a stent fitted but no one can get to the bottom of this i,v got another app with a cardioligist for a second opinion,i,v also read that the pd meds can cause heart problems but i just feel unwell all the time and cant get any answers.
Hi
My wife is suffering from a similar feeling of being dreadfully unwell with the PD. Have you found anything that helps?
Wish I could say that I had. The only thing that I find helpful is to bring forward the next madopar dose. I should have 3 hours between each 125 cap but often reduce it to 2 and a half hours.
There are things that make it worse - being alone, especially at night-'pushing' myself physically and eating protein. This latter restriction has meant a carb based diet which has piled on three extra stone which I'm sure are contributing to it.
If your wife's episodes of feeling dreadfully ill coincide with medication wearing off time then I think you could look at trying to smooth out the on/off periods. If the feeling is more constant then I think you should try to find a good doctor who is willing to take an overview of what may be going on.
I completely identify with what you describe. I'I m reassured that I'm not the only one who feels as though I'm dying. Every 2 -3 hours as my madopar wears off I get massive hot flushes - drenched in sweat with it running down my face and soaking my ckothes. At the same time I am overwhelmed by feeling iller than I could have imagined a few years ago, I lose all motivation to do anything except sit and stare into space and my mental state is of someone in acute severe depression - I can't even force myself to speak. Usually within 30 - 60 minutes of taking the next dose I am restored to normality. It is an incrdibly stressful way to live. My PD nurse says the hot flushes are 'normal' - my consultant says he's not heard of them (hardly reassuring). None of the medics seemed particularly interested in the other aspects or finding out why it happens. They jus want to know if I 'freeze' (Answer - not physically but I would say i definitely freze mentally) Ihave checked my own b.p - which is lowish but no lower during these episodes and then I checked my blood sugar (or rather asked some one else to as I lose all interest in doing anything while in these 'off' states)- again no change from normal. I do have quite frequent heart arrythmias - associated with madopar but heart investigations a few years ago showed nothing untoward and they happen as often when I'm 'on' as 'off'. These horrible episodes happen several times a day unless I stuff myself with madopar at a rate of 800-900mgs a day. I had to give up work 2 years ago and now my social life is being ruined because I can never commit to being able to function at a particular time. I do wish someone would do some serious research into the non motor aspects of PD. I find them , at the moment (11 years dx'd), even more debilitating than the motor impairments.
Jan
in reply to pen1
Pen1, I agree with you totally that the non-motor aspects of PD can be very debilitating. Even more so than the slowness of movements (walking, bending, etc.) I, too, feel I am so ill and at times wanted to be admitted to the hospital for observation. I truly thought these horrid feelings would never pass. Once the meds kick in all is fine, but only for short awhile. Difficult to plan anything, even short shopping trips!
PD must even baffle the experts as everyone's situation is different. Plus, my non-motor movements are not the usual ones indicated on websites and books.
pen1 in reply to
Hi Puddlejumper (love the name) I can't say I'm glad you have the same experience as me - I wouldn't wish it on my worst enemy - but it is a relief to hear from someone who understands what I'm talking about. I wish we could somehow interest medics in doing more research into the non motor aspects of PD. I am so fed up with the widely held perception that PD is 'just a bit of shaking and stiffness'. It's so stressful feeling 'normal' one minute and then within fifteen minutes feeling - and looking- like death warmed up. I worry what people think when I change in front of them - going from credible human being to incoherent, dripping with sweat and apparently dying. Or sometimes the other way round - which tends to astonish them even more.
My experience with many neurologists and other medics over the last 11 years is that they are all very pleasant and helpful but, once the diagnosis is made, no one is actually very interested in the wide variety of symptoms. The usual response is 'Oh well, PD affects everyone differently' and that's an end to it. The scientist in me is shouting the question 'WHY does it affect people differently?'. Our different experiences might well have slightly different causes - and pin pointing those could lead to more effective individual treatment.
It's one of the reasons why I am holding out against DBS - if no one can give me a precise explanation about what's going wrong in which specific tiny area of my brain , there's no way I'm letting anyone poke about in it on the assumption 'this helps quite a lot of people!!'
How can we encourage medics to stop concentrating on motor impairment? A couple of years ago I met an enlightened clinical psychologist who told me she thought PD should not be classified as a movement disorder but as a 'brain disorder with multiple manifestations of impairment, including motor problems'. I think we need more like her!
MPVL in reply to
Hi
My wife is suffering from a similar feeling of being dreadfully unwell with the PD. Have you found anything that helps?
Pen1
I had symptoms as you describe and I found an article that describes them exactly if you want I will post it.
4 days ago I switched from Madopar to sinemet and feel sooooo much better. From my reading I see madopar Peak dopa levels are higher, occur sooner, but decline more rapidly than sinemet. I felt like I was on a roller coaster. Up down every 3 hrs, now much smoother. However it may be quite different for you.
Hi Hikoi. Thank you for replying I should love to see the article you mention.
I'm also very interested in what you say about madopar. I take 200 mg of entacapone with every madopar in order to prolong the effect but , yes, just as you describe I live on this horrible , relentless, roller coaster 24 hours a day and would do anything (almost!) to smooth it out. Years ago I was told that sinemet had an agonist in it and as I had reacted badly to agonists I shouldn't take it. But this was by a non specialist GP. Maybe I should give it a go.
Hi
My wife is suffering from a similar feeling of being dreadfully unwell with the PD and takes Sinemet which doesn't really help the awful feelings of being unwell. Have you found anything that helps?
It is difficult to respond without knowing a bit more MPVL like how long she has been diagnosed and what her current treatment is and how long she has felt unwell.
The thing that has helped me the most has been decreasing my dose of sinemet so I take smaller amounts more frequently.
Libberty , Your life sounds hellish at the moment - I hope you get relief soon.
Pen1 some of your comments made me start wondering about one of my treatments: ApoGo. This involves subcutaneous injections of Apokyn (Apomorphine) which stops 'freezing'. Like you I have been dxd 11yrs & the freezing only started in the last 18 months, around the same time as flushes & frequent wearing off became major issues. However, I have found that the injections, which stop the freezing in seconds, have also had a positive impact on shaking & flushes. It may be coincidence, it may be increased confidence allowing me to relax subconsciously or it may be an unrecorded benefit (side effect) of the treatment. Apomorphine is another agonist but it goes direct to the brain bypassing the stomach via injection.
Hi Honeycombe3, Thank you for the info about ApoGo. It sounds as though we have a similar profile with flushing and frequent on/offs. I must say if I could find something to stop the hot flushes it would make a vast improvement to my life. At the moment I have electric fans in most rooms and have to sit in front of them for up to an hour several times a day. I have a hand fan for when I'm out but it's not effective and my trips out are severely limited now.
I notice that ApGo is an agonist. Unfortunately I had a very bad experience with agonists when I was first diagnosed; I was put on monotherapy of the highest dose of Rotigotine (Neupro) patch and developed obsessive behaviours.(mainly to do with hobbies and craft and risk taking -nothing sensational but pretty destructive) My current neurologist has been very wary of giving me agonists again but last year re-introduced a 2mg Neupro patch with no ill effects. This has recently been increased to 4mg in an attempt to iron out the on/off periods but I think I can feel myself becoming obsessive again. I'm not sure whether apomorphine has the same risk of causing obsessive behaviour - or whether all agonists carry the same risk. I'd certainly like to give it a try and will ask at my next appointment.Am I right in thinking that you have to stay in hospital before you can use the ApGo injections? Or maybe I'm thinking of something else.
Thanks again for the helpful advice.
Hi Pen,
Starting at the end first: the ApoGo challenge is a procedure which can take up to a day (2 - 3hrs in my case) whereby you leave off your meds for 12 hrs then arrive at the hospital early in the morning. You are then given various standard tests for PD without meds & the results recorded. After a an injection of Apokyn & a pause to see whether or not there is an adverse reaction/positive response you then repeat the tests. In an hour you do the same again with an increased dose until you reach the dose which suits. My challenge was supervised by a nurse from the drug company & she has followed me up since.
As ever with PD it doesn't suit everyone as I discovered during a PD nurse clinic when an elderly gentleman shuffling with a walker came out as I went in. She told me he had taken the challenge & all it did was make him sick.
Re OCD my main problem has been weight gain due to binge eating......I could go on but as I don't want to bore the pants off other readers I'll message you my contact details on this site. If you Skype we could have an in-depth chat about our symptoms & progress - I think you are from UK.
Hello honeycomb3,
Only just seen your post regarding ApoGo and its effect upon freezing. I was just wondering, how long does it take for a dose of ApoGo take to wear off?
I would have thought that the thing to do was to go back to whoever did the original dbs. Have you still got your discharge from hospital papers - there is presumably a contact number. Remember no system is fool proof and you may have missed out on information at some stage. Whether you are right or wrong in suspecting the dbs, your symptoms should be dealt with not dismissed.
Failing that, could you try phoning your neuro's secretary and saying that you are not right following "deep brain stimulation". and your GP is not listening. Many GP's will admit that they know little about PD. Is it the PD nurse as well? You could have another go at the GP. I would say dbs in full as though dbs is more common than it was it may not be clear enough just to say dbs - One cannot often see the GP of choice for continuity and I certainly felt it when we had a parade of locums at our Surgery and it has just occurred to me also that perhaps you have the Parkie soft voice?
Best wishes
I also get these symptoms, before medicine is de, then I just sit with blanket in my recliner, until the med kicks in, 10:45 before 11:00, and 2:45 take pill at 3:00, sit in recliner until pill kicks in. We can send men to moon, why can't we get a pill that will sub stain us before (down Time)?
When pill wears off, it is as someone has pulled the plugged, or the light are going out!!!!
I find it difficult to believe that for almost 200 years this disease has been known to science, with minimal progress, other than identifying symptoms and telling people to exercise. Carbidopa/levodopa is still the most effective med and has been around for ages. A treatment for Ebola came about when thousands started dying. I know we are talking about vastly different illnesses, but the lack of substantial progress is shameful. Do I sound a little frustrated here ?
The aids story is interesting. People (mostly men) held sit ins and public protests so people could recognize their plight. They didn't hide it. And i think we need to be more vocal about our situation. You notice that no one is dying of aids anymore and the development of medications didn't take forever. Let's speak up and speak out. We need help!
I feel like people with PD are on the back burner, left to muddle through as best we can, addressing symptoms as they arise, assisting others with our experiences. Not enough. The brain is complex, but surely, somewhere there is more progress to be made. A medication to reverse symptoms and and allow people to reclaim their lives.
libberty21, well, I don't think they make levodopa on its own any more and when it first was used many people had trouble with feeling sick. Development of Sinemet or whatever the generic name is improved things greatly. However some people still have a bit of bother with biliousness. Either due to sensitivity or because of overdose.
Now , six doses of Stalevo 75 seems to me to be enough to constitute an overdose now that your PD has progressed some.
As we get older and our PD progresses we need to cut down our dose sizes because (and this is my understanding that may very well be flawed) we loose the ability to store Dopamine.
So a sudden influx (i.e. what used to be a normal dose) that now cannot be stored or all used immediately will result in too much Levodopa / Dopamine floating about and making you feel sick. So as we age we need to take smaller more frequent doses, thereby more closely matching supply with demand.
This is not to be taken as fact, its just my theory and probably some other folk too. Perhaps there are some websites somewhere, that are more authoritative than my contribution here.
Whatever, you should take professional advice rather than mine as I am not medically trained.
Anyway I hope you get yourself sorted. There's not much that is worse than feeling sick.
That's the problem. We need something now. 2 or 3 years is just unacceptable.
Liberty do you have this all the time or does it come and go? If it comes and goes it may be worth tracking and watching when it's worst. I got similar symptoms everytime I take meds, which calms down after a while. I also didn't tolerate stalevo getting stiff and sore, but was much better on Madopar or sinemet
I also have blood pressure and heart not acting normal particularly when I rise from sitting or stand quickly. I also experience body heat fluctuations and sweating and have been told it may be an autonomic nervous system dysfunction problem. I am going in April to the lead medical hospital dealing with this issue at Vanderbilt in Nashville for testing. My neurologist referred me and it took a year for an appointment. They are Vanderbilt Heart and Vascular Institute, Autonomic Dysfunction Clinic. Not sure if it will lead to any improvement but want to see what they diagnose.
Karolmilk
I went down the same road, I don't believe there are answers but I have a greater understanding. Autonomic dysfunction is well known as a part of Parkinson's Disease. I've learned how to cope with the symptoms and avoided taking yet more medication. Good luck.
There is a lot of information around such as this link below.
dysautonomia.nyumc.org/auto...
Yes, I asked if they would have suggestions that didn't use medications and they indicated they did. My biggest complaint healthwise is the inability t o excrete bowels. My brain doesn't relay the message and so I have to have an enema every day which is tiring and takes time, not so easy to travel either. I also get yeast build up because everything bowelswise works so slow. But, I guess things could be a whole lot worse!
i'll write more later when i'm more on and can type. just wanted to say me too !
Hi Libberty.
I know exactly what you mean about feeling so deathly ill and not having a clue why some of those with Parkinson's feel so ill and others don't. I sometimes don't think I'll see another day!
I'm 63 and have a twin brother who has had Parkinson's for about 6 years now. He's not doing too badly but is suffering nonetheless, taking each day as it comes. Yet, he never feels deathly ill.
I've been convinced for many years that I have the early stages of Parkinson's but do not have trembling, which was my brother's first symptom (left hand, arm and leg). I've not had the typical Parkinson's symptoms recognised by the doctors but have been having many of the non-motor symptoms that many people with Parkinson's have, subtle at the begining but now becoming much more of a problem. But, my major problem over the years has been feeling so ill at times I think I'm about to die. I never put it down to Parkinson's but seeing posts such as yours and reading the many replies, I really do wonder.
I suppose it was about 7 years ago when I first knew there was something seriously wrong. I had been working quite hard physically over the course of two days and felt so ill I collapsed to the ground thinking I was about to slip quietly away for sure. No palpitations, no pain, no sweating . . . just absolute and total exhaustion that made me feel incredibly ill and like I had no more energy left in me to take another breath. It took me three or four days to feel anything like normal again. I had my heart checked and all types of blood tests done only to find nothing. Over the years this has happened to me perhaps 4 times upon physical exertion, enough to get me to the ER each time, and many more times when I just waited till I felt better. All this time my non-motor Parkinson's symptoms were also increasing. Always, doctors could find nothing and offered only antidepressants. These days I'm feeling this ill almost all day long, every day and I have absolutely no energy left at times to do anything at all and, if I push myself, I know I'll pay a huge price later. Just as many of you have described.
But, I tell myself maybe this isn't Parkinson's. Maybe this is something else I have AS WELL AS Parkinson's. I had a tick bite about 18 months ago on my leg (still experiencing some of the non-motor symptoms of Parkinson's at this point). My doctor gave me a week's course of antibiotics, which I now know is nowhere near enough. We (my wife and I) live in an area where we see plenty of deer and we've always done a lot of walking in the area. In fact, we've always walked as a hobby for the past 40 plus years. So, theoretically, either of us could have been infected by Lyme at any time since then. There are, some think, epidemic proportions of Lyme in many parts of the world yet it is not always recognised as a major illness. Lyme also can stay dormant for many years before it produces symptoms. It can also be very difficult to prove one has Lyme as many doctors don't take it seriously or know how ill it can make you or where to go for decent testing. The usual tests are notoriously inconclusive anyway. If you research Lyme, you'll see that many of the non-motor symptoms of Parkinson's look exactly like Lyme. Feeling very, very ill is a part of Lyme. Many of the symptoms I've read about on this post could possibly be those of another illness, perhaps somthing like Lyme (and visa-versa). I'm not saying this is the case for you, or for me, but what is it that makes our version of Parkinson's so different to that of others with Parkinson's? I watched a documentary the other day in which a scientist had examined the brains of 10 Alzheimer's patients. 7 of them contained Lyme bacteria. If this percentage can show up in Alzheimer's, could something similar be going on with Parkinson's? I don't want to add to your worries (I'm in the same boat remember) but maybe these really terrible symptoms we have are not actually caused by Parkinson's. Maybe, at least some of my most debilitating and disturbing symptoms are coming from somewhere else.
Doubting everything was down to Parkinson's and not being able to prove it could be Lyme, I sent off for a kit to test for mold infection. The test came back postive for mold. I could have breathed it in anywhere over the past few years, even just by raking up leaf-litter in my garden. The point is, mold can make you feel very, very ill too. It can harm you neurologically, cause breathing problems, pain, vision problems, balance problems, mess up your central-nervous-system, cause autonomic nervous system dysfunction, extreme fatigue and many other difficult symptoms, just as Lyme can do. I sometimes wonder if these, or maybe other illnesses, are causing the "feeling so ill I think I'm about to die" symptoms that I, (and maybe you and others who have replied to your post) are having that others with Parkinson's are not.
There are millions on the planet with Parkinson's, probably many more with Lyme Disease, probably many too with mold infections. Statistically, some of us will have two or even all three of these illness at the same time. That's to say nothing of any other "nasties" that we can pick up or are exposed to. Ideally, as individuals, I suppose we should consider the possibility of living around or being exposed to such things as Lyme, mold or any other harmful substances and do what we can to eliminate them or reduce our exposure. There are some things that can be done to help improve the symptoms if you're lucky.
I know these observations won't help you, or me, to feel better in any way and I know getting our doctors to consider any other causes once they've diagnosed us with Parkinson's is impossible but, perhaps they're just food for thought. I've been told for years that none of my symptoms are Parkinson's related. Once my doctors finally admit that some of them are, and have been all along, I fully expect them to say that every new symptom I develop from now on will "just be a part of Parkisnson's" even if it's not.
I've got my 6th appointment with my Parkisnon's specialist next week, even though he's not yet officially diagnosed me with Parkinson's. The first four appointments he said I did not have Parkinson's (even though my twin brother has it and my father had it). On the last appointment he did the usual examinations on me and said "Well, maybe you do have it . . . things have changed since the last time we met" I felt like shouting "They haven't changed, you idiot - they've PROGRESSED! Just as they were bound to do". I don't know how to tackle the points about Lyme or mold, and the terrible symptoms I'm now having, with him and I can't imagine what medication I should start taking, assuming he'll even offer me any. You never know, perhaps he'll start me on Parkinson's meds and perhaps some of my deathly ill feelings will ease off. Perhaps they really are part and parcel of Parkinson's for some people. Either way, I'm not happy to be in the place I am and I feel so much for all of us who are suffering in similar ways. I'm going to keep working my way through this if I can although I wish I could do it without having to plead to the medical profession so much, knowing all along they'll do so little and take their sweet time about it too.
Hi
My wife is suffering from a similar feeling of being dreadfully unwell with the PD. Have you found anything that helps?
Ditto. Find a new dr who will work with your side effects and change the meds
Hi MPVL
I'm clearly no expert on all this "feeling so unwell" with Parkinson's other than the fact that I do experience this problem. But, I'm sure, for me at least, something else is going on at the same time as Parkinson's. It may be an idea to consider other possibilities forsome of her symptoms. Many other things can cause us to feel really ill and some of them may just need someone who's prepared to do some testing and a bit of thinking "outside the box" (your doctors or nutritionists perhaps). Is it possible that your wife has been exposed to mold, or tick bites, toxins of any sort? Any possibilty of carbon monoxyide poisoning? Does she have issues with her gut (yeast, candida etc)? Is her heart OK? Diabetes, B12, vitamin D deficiency, magnesium deficiency, any mineral deficincies? I know I'm muddying the waters and I'm sorry but there's a million places to look when trying to find out what makes us feel so ill. I know because I've looked and the more you look the more confusing it gets.
The only thing I can suggest, if you have the time, energy, strength and (possibly) the money to pay for tests that can be expensive, is to talk to your doctor and ask him if he thinks it worth looking elsewhere for the reason your wife feels so ill. If he's worth his salt he ought to at least consider other possibilities. Perhaps test for Lyme if you live in an area where it's likely to exist. Same with mold. Check the place in which you live. How's your health? Do you share any symptoms with your wife? Definitely check B12, Vitamin D and other deficiencies. You'll see lots of info on the net that suggests many Parkinson's people are low in both of these. They're easy to check for and, if your doctor understands the implications, easy to treat for too.
I know it's hard to do but, perhaps you could really take a good look at all of her symptoms and when they're worse for her, to see if anything triggers things off, like food or weather or temperature. I know I can feel not so bad at one moment, then like I'm about to die five minutes later. So, I'm sure something must be a trigger of some sort for this to happen in this way. What it is I still can't say. Or is this really just another Parkinson's symptom? I don't think so.
You ask if I've found anything that helps. I'm sorry but not at the moment. I suppose rest helps, but I soon get tired and feel ill again once I've done something physical. Eating healthily I think is a must. Anything that helps seems to take a long time to do so, so there's no instant fixes for me. Keeping positive is a must too but incredibly hard to do. And trying to find something to laugh at, like favourite comedy programmes, at least takes your mind off the problems for a while. And I avoid looking at the news if I can. Nothing there but negativity which deflates your mood and, I'm sure, can't be good for your morale, and, therefore, your health. I often feel better if I've seen someone like a masseur of some sort of physical therapist but, again, I think that's a mood thing. Especially if they listen to me talk about my problems whereas I feel exactly the opposite when I talk to my rubbish doctors who never listen and tell me it's all in my head. I wish they'd have this going on themselves, I really do. Maybe, one day some of them will. I wonder how they'll handle it?
Anyway, I wish you and your wife better times ahead and hope you do find a solution or are, at least, able to eliminate other reasons for your wife feeling so ill, and that maybe she'll feel better if you find something that helps. I wish I could help more.
All the best.
i also feel unwell no energy shakes headaches pains everywhere got to lie down & nap especially in the afternoon i also feel like im dying
Have you been diagnosed with Parkinson's? Are you on medication?
Frank
Sorry you feel ill but I feel sick all the time.i have a lot of issuses and with Parkinson it makes it worse.
God is s
Till good
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