headaches and dizzy spells

Posted , 5 users are following.

Dose anyone get headaches and dizziness with Sarcoidosis. I was diagnosed with Sarcoidosis almost a year to the day. I am still on steroids. But keep having relapses. My chest ex ray is clear and I am getting very little help from GP. The Fatigue and uneasy dizzying spells are daily and have been since April 13. The specialist says it's common to feel severe fatigue for years after sarcoidosis goes. Dose anyone have similar problems. Thanks Robin

1 like, 8 replies

Report / Delete

8 Replies

  • Posted

    Yes I have dizziness and it makes me wobble at times. The steroids cause water retention so that could be a cause of the headaches. I take 400mg Ibrufen plus 1000mg Co Dydramol twice a day and I still get headaches. I was diagnosed in January 2013 and my chest xrays show improvement but Im not clear. The Fatique is overwhelming at times, I have learnt to manage my daily tasks so my energies are not wasted. I rest a lot and find ways around that. I went back to work full time against my Dr's wishes and that exhausts me. Its about changing lifes patterns to manage your health. Its extremely frustrating and really depresses me at times as I cant do the things I should be able to, even taking a shower is a mammoth task
    Report / Delete Reply
  • Posted

    Thanks for the reply. It is very frustrating. I was active with running and golf. But am only able to do these on very good days and they are few and far between. What type of headaches are you getting. And are you still on steroids? My headaches are pressure type headaches but they last all day. And dizziness is scary at times. I was off work for 3 months . First 2 off those in bed unable to move. Took 5 visits to GP and 2 hospital visits and 11 weeks before I finally got diagnosed with sarcoidosis. Was doing well due to 30mg of steroids but as I keep dropping tiredness is hitting hard. After a days work. Straight to sofa for 2hr nap. Feel like im dou le my age. Only 42.
    Report / Delete Reply
  • Posted

    Im 42 in April and feel about 90. I hurt all over, my hands are tingly and so are my legs. I was taken into hospital on 7th Jan 2013 as I had cellulitis in both feet and legs and a raging fever. I was 40. Apparently its the ideal age to get Sarcoid. I was to be sent home the next day as they said I had athletes foot !!! On admission I had a routine chest xray. The nurse said I was too ill to go home and next day put into isolation in a double barriered room. I was in there for 24 days. My leg infections got worse and worse. I had Panniculits, Cellulitis and Streptachoccus. that was dangerously high. It was a far reach from Athletes foot which I had no signs of. They kept mentioning TB to me. I had night sweats like you wouldn't believe and was just so poorly. I then had a severe reaction to all the drugs I was on, my liver and kidneys weren't functioning properly. I then became covered and I mean covered in a thick dense red rash so they took me off all meds and left me to 'pull though'. The respiratory team came to see me about the abnormalities on my chest xray. The talked about Lymphoma, TB and Sarcoid. I had scans, tests ultra sounds, CT's you name it I had it. Cut a long, painful and scary story short, I was diagnosed with Sarcoid in my lymph nodes that affects my lungs and has caused scar tissue.

    I came out of hospital and after the weekend went to my GP for a sick note. This was a shock to him and he gave me a note for a wee but told me to go back to work as soon as possible. I felt too ill to even die let alone go to work. In the end I was off 9 months and against my Consultants advice I returned to work in September. I am a teacher and work have been supportive. I struggle everyday at work but its sheer bloody mindedness that gets me there every day. I have enough (not always though) energy to get to work. On getting home I cant do anything else. My social life doesn't exist. My relationship ended as he couldn't cope with my lethargy. I was put on Steroids when I left hospital and they gave me free buckets of fat and threw them at me and it stuck straight away. I bloated up and put on 3 stone which I cant shift. I have water retention massively in my legs and this can be agony. I struggle to walk, I limp, my back is affected as my legs hurt so much. every joint is painful, I get back aches because of my lungs. My fingers tingle, sometimes I have no strength in my hands. I pour sweat at times. I wobble, I get headaches and just feel unwell. Exhaustion doesn't describe the level of tiredness. My consultant is excellent on the respiratory, but insists my symptoms are due to my weight gain. Im still on steroids over a year later and currently being tested for Diabetes due to the steroids. I can be so grumpy and the frustration can be overwhelming. I am battling my weight gain and water retention but am not treated for either. I am generally a very active person, swim, never off my feet, renovating my house, gardening, working full time leading a busy department. When I run out of energy Its like someone pulls the plug out. Doesn't matter where I am and what im doing. If I need to sleep or rest I have to do it regardless. Ive learnt to adapt my life around it and it does my head in that it rules my life. I battle it daily. It upsets me that people don't understand that Im 'not better yet'. They judge me as being sweaty, breathless and 'moonfaced' because im overweight. Not as a side effect of Sarcoid. They don't understand sarcoid 'whats that?' Be easier to have leperecy ! Oh the other thing I itch like mad. Apparently a side affect.

    On the upside, a year on, I am better than I was, I count my blessings, I Havent got cancer, I kept my legs and I didn't die. All were possibilities. Although I battle my condition every day, Iook at it as a positive. I looked at my life before and it was a train crash waiting to happen. Im a better person now, I accept my limitations and I put myself 1st instead of everyone demanding from me. Life is slower, but I appreciate the view, I appreciate the little things in life. Yes ive felt sorry for my self, im am human, but living with it, Ive made Sarcoid my friend. Its a coping strategy. Oh the other thing, I have a CPAP machine. A side affect is having sleep apnea and I have the continuous air pressure programme. I wear a full face oxygen mask at night. It doesn't give me oxygen, but it blows air under pressure to keep my airways open so I can sleep and get quality sleep. Took some getting used to, but at least I can get through a day. I was sleeping about 18 hours a day and waking up exhausted. Wasn't getting the deep quality sleep I needed. A very ugly process and true passion killer but its how it is.

    As for the headaches, Sarcoid needs you to drink lots of water. I don't. It could be you are dehydrated, especially if you sweat as I do.I had a very heavy head until I had my sleep apnea diagnosed. I get tension headaches, and they make me grumpy(ier). The steroids, make my nails very weak and my hair so thin and fall out. I have very thick hair which is lucky as people don't notice very much but I know. I shouldn't have to, but I pretend every day, put a smile on my face and battle on. Nobody wants to know you when youre miserable. When they say are you ok? I say yes, or im not too good today. When I want to say get real, I hurt like hell, im knackered and youre doing my head in. people have time off work for the slightest thing and I think what on earth am I doing here when youre off cus of neck ache

    I felt so so alone, a freak and I don't want to be like this. But I am. its a day at a time, Im not well but I can see how ive iimproved and continue improving. If I laugh I sound like dastardly and mutley and it makes me cough - yes I have that too, but I have to see the funny side or I would sit and cry all the time, If I had the engy All I can say is, I completely, get you, genuinely know what youre going through and it slowly gets better.

    I felt completely alone, nobody understood me, nobody gets the hell I go through.

    Im off to the Drs any second as I have an upset stomach and its on going. Im not blaming the Sarcoid for this one. lets hope they listen to me and not just hear

    Report / Delete Reply
  • Posted

    Just back from the Dr's. I saw the lady Dr who is human and is supportive of my Sarcoid. My blood tests at the end of Feb show I don't have diabetes - a side affect of long term steroids. I told her I didn't want Diabetes and wasnt going to have it. She thinks its the combination of drugs I take causing my stomach problems. I already take Omozerprole for my stomach lining and she has doubled my dose. She has also prescribed Peppermint capsules. She was supportive of having acupuncture and alternative meds to support my well being.

    Talking of your head aches, I had a head injury about 8 years ago, I slipped on a concrete floor and my head bounced down the concrete steps. I had the mother of all headaches funnily enough but it lasted 4 years. That affected my life a lot. The only thing that cured it and I mean cured it was I saw a cranial osteopath. I went and the put his hands on my head, my lower back and my feet and charged me £35 for the pleasure. its not osteopathy that pulls you about. The next day I felt rotten which apparently is a good sign. I went for 6 sessions and gradually made changes and until Sarcoid never had another headache

    Anything like me, I will try anything now to make me feel better. I never took meds before Sarcoid, cant manage without them.

    I also am prescribed Hydrocloxocloroquine for my Sarcoid. Its for Rheuomotoid Arthiritis but my consultant gave it me. I take 200mg twice a day.

    I hope some of my experiences can help you and the most important thing is to know youre not alone and you are understood

    Report / Delete Reply
  • Posted

    I was just diagnosed in march. It started with my eyes and I ended up finding out , it's in my lungs liver pancreas. I have major headaches all the time and I don't know what to do ?

    Report / Delete Reply
    • Posted

      Hi Bekah2014. See my reply to robin00540. Don't know if it would help. In addition to steroids I'm also on immuno therapy of infusion infliximab and tablets imuran

      Report / Delete Reply
  • Posted

    Get referred to a Neurologist! Or do what I did - go to an optamologist or optometrist or the eye casualty who will do an eye health check where they photograph the Eye! ! I have neurosarcoidosis which presented with agonising migrant strength headaches. I ended up in hospital with viral meningitis. My GP was useless. I don't think GPS take sarcoidosis seriously as I had sarcoidosis in the lungs and skin 14 years ago and she still refused to listen to Me! I had to fight to get diagnosed. I'm now getting headaches the past few days so getting another eye health check tomorrow.

    Report / Delete Reply
  • Posted

    When I first found out that I had sarcoidosis I was put on steroids and gained a bunch of weight! And im already heavy enough. I was miserable. And on top of that it was doing nothing for me. So I March in to my lung specialist, (i was going to him because the sarcoidosis was attacking my lungs). However he put me on Acthar Gel! I swear by this. It has not only shrieked the lymphnodes on my lungs it has helped the RA that comes along with the sarcoidosis. I have come off most of my pain meds and the only new thing I have seen is sensitivity to my lungs and allergies lol to different things. However, I can manage that. Oh and i have development of these headaches. I will ask my new doc about. After these antibiotics kick in for the allergies. However i was able to return to work for the first time in 11 years. I can say if I can any one can. Just keep the faith lady's and keep pushing to find the right resources. I will too sincerely, Heather Hampton

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up