Feeling dizzy with "fuzzy" head!

[Billswife]

I am currently almost at the end of second week on 9.5mg Pred and planned to continue with that dose for a further two weeks before tapering to 9 for the next four weeks (all going well). However this week has been a bit up and down with intermittent dizziness and feeling of being unable to focus properly. Is this anything to be concerned about or simply another "side effect" of PMR. Tapering until now has been relatively OK with just a couple of days of feeling "a bit off" during the first week of 10 mg. My GP is off sick at the moment so is unaware that I am tapering much more slowly than she originally advised, but I am taking Dorset Lady's advice on my previous post and I have to say I am very glad I have. Just a bit worried about the dizzy, spaced-out feeling. Thanks again for all the help and advice given on this forum, it is a real life-saver.

[PMRpro Ambassador]

I can't comment on the dizziness but I would certainly give it a bit longer before trying the next step.

I'd give it a few days and if it doesn't go away or gets worse see a doctor for an opinion.

[Billswife in reply to PMRpro]

Thank you for your quick reply. I plan to have a quiet weekend with a lot of rest and see if that helps. If not, I will try to get an appointment with one of the other GPs in the practice next week. I plan to remain on 9.5 for at least another two weeks. I am still quite new to this condition and think I am still quite anxious about it all.

[DorsetLady PMRGCAuk volunteer]

Hi,

Wouldn’t have thought the dizziness was Pred related if you haven’t encountered it previously. More likely in higher doses, and maybe initially rather than whilst reducing.,

As PMRpro advises stay on current dose for a while longer - but obviously if fuzziness/dizziness gets worse you need medical advice.

[Billswife in reply to DorsetLady]

I will take yours and PMRpro's advice and see how I feel on Monday after a quiet weekend. Thanks again for being there.

[jaycee444 in reply to Billswife]

I am also in the process of reducing and since going down from12 to 11mg have had a few days where I feel quite 'spaced out' so not sure why thats happening. Its not every day but uncomfortable when it does occur. I think feeling anxious about it probably makes things worse but it is difficult not to worry when we get some of these things thrown at us and we are not sure whats causing it all.

[Billswife in reply to jaycee444]

Yes, spaced out is not a good feeling and I have felt it occasionally but not every day. I agree that anxiety is probably a factor as it is early days for me too. Good luck with your reduction journey, I am going to do it really slowly as I feel safe with the advice given on this forum since my GP is off sick at the moment. Thank you for getting back to me.

[Noosat in reply to Billswife]

I have tapered to 4mg., for 5 days, and I do have the ups and downs, including occasional fuzziness, each time I go down, even though slowly at half a milligram, I go through the same feeling. I tell myself that it is the adrenals trying to pick up the slack. Also, even though I know I must monitor myself carefully, I must not dwell overly on the things that inhibit my daily life, but just get on with living the best I can.

[Smokygirl]

It’s a horrid feeling! Had it badly this morning after having internet probs doing my banking on line—— so silly to get so stressed cos I could have left it for another day, but got myself frustrated and then oh boy—- felt really ill.

It’s SO crazy!! Have just crawled into bed for half an hour!!! Hugs xxxx

[Blearyeyed]

Do you take other medication as well?

Especially things like beta lockers or other pain meds like Tramadol , Codiene or nerve pain medication like Carbamezapine , Garbepentin , Amytriptyline etc.

The combination of your medications can sometimes cause extra fuzziness , ' brain Fog' dizziness or a feeling of being spaced out. Even more so if you are feeling generally rundown.

If you aren't on other medication , it could be that you system is a little run down while your body balances to your new dose combined with some dehydration or low iron and mineral salts.

Sometimes your body is dehydrated even when you don't feel thirsty.

In fact , often the Hunger you get on steroids isn't real hunger for food but for fluids which is why eating doesn't always solve the problem.

You use up alot of nutrients as your body copes with the change in dose , and changes in weather and temperature and activity can also put a toll on your nutrients.

Being low in vitamins , minerals and fluids can make you feel fuzzy and dizzy.

You might benefit from drinking more , especially when feeling dizzy by keeping a bottle of water with you , and taking a full vitamin and mineral supplement.

Try increasing foods in your diet with lots of minerals and B and C vitamins , like Bananas , Shellfish and oily fish , eggs, green vegetables , red peppers , blueberries and citrus fruit.

Also , keep note if any other symptoms as dizziness can sometimes be caused by an infection on the way , or other health issues you might have like blood pressure issues or recurrent kidney infections or UTIs , especially if you also suffer from sweating and nausea.

[DianeA1 in reply to Blearyeyed]

All these comments are really good, and I second the one about drinking more water. Though we are all different, sometimes I wake up with cement head and dizziness, and rest and hydration help me. All the best.

[Billswife in reply to Blearyeyed]

Thank you Blearyeyed, and all who replied - I am on a combination of drugs for high blood pressure, one of which is a beta blocker, and also thyroxine for under active thyroid. I have read your reply with great interest and intend to implement your suggestions re diet and intake of water. I do feel a bit better today and am taking things very easily.

[Blearyeyed in reply to Billswife]

Glad it was helpful. Thyroid issues can definitely cause more dizziness and the symptoms you are talking about , and the combo of all the drugs can make you more tired and dizzy.

It might be a good idea to get some blood tests done again if you haven't had them checked recently , recheck the thyroid results , Vit B , iron , Vit D , and magnesium and sodium if you can get those too. If you have deficiencies in these they can add to the Dizziness and Fatigue caused by your illnesses.

Let us know how you get on.

[Telian]

I've always had the dizziness and spaced out feeling when reducing and the lower I've tapered the longer it lingers. Rheumie says it's the pred and wants me to keep trying to lower my dose as and when I can. He knows I've always suffered nasty withdrawals and doesn't pressure me. They're not nice feelings but I don't fret and rest when my body tells me to. I would love to be off pred but don't think it will happen anytime soon.

Don't rush into your next taper - wait until you feel better but see your doctor as she needs to help you manage your doses and more importantly know how you're suffering.

GCA/PMR 5 years 6 months Current dose 4mg since September 2018.

[Billswife in reply to Telian]

Thank you Telian, sorry to hear you have the dizziness etc. too but reassured that I just need to take time when tapering and I know I should probably rest more than I do.

[PMRCanada]

How’s your blood pressure? I found out mine was low and first reduced my bp med dose in half last summer. Recently the dizziness and light-headed feeling returned along with about a months worth of low bp readings, so I’m off it completely since Aug 6. Feeling better but still the occasional day of such symptoms. I will discuss further with my GP at my Oct appt. and I remember him saying I would wear a 24 hour bp monitor to ensure I should quit my med completely.

Diet can also sometimes be the culprit, and if I wait too long between my lunch and supper, I can sometimes feel faint or light headed/dizzy.

Hope you get to the bottom of it all because such symptoms are not only annoying, but for me cause nausea.

[Meg1933]

I know exactly how you feel, my balance is not good, my specialist is trying to get me down from 8 to 7mg, don’t think I will make it. Every day is a struggle but I try to keep going. I have lost the sight in my left eye due to GCA, which has left me with 24/7 chronic pain , due to nerve pain, which is a lifetime thing! I also have 24/7 chronic pain in my leg and foot, caused by a botch hip replacement 4 years ago. The surgeon damaged my sciatic nerve and left me with a drop foot too!. Shit!

[ClarkB]

I experience dizziness too, regardless of the steroid dose I have been on whilst tapering. I have balance issues as well, and walk into things! Looking back, the dizziness and spaced out feelings have occurred long before I was diagnosed with PMR. I developed diverticulitis in 2013, and had the same symptoms, in addition to the condition itself. The difficulty is on working out which illness produces which symptoms. Am on blood pressure tablets too.

I’m in awe of other people on here who are able to give sound advice. I can only comment on my own experiences, which might in part relate to yours.

[Billswife in reply to ClarkB]

That is very interesting ClarkB and makes me think that the dizziness etc. might be no more than my mind telling me to slow down a bit and relax a bit more as since being on BP medication I have had no more high readings and it all seems to be under control. I am so grateful for all the replies I have had here as I feel much more reassured and, as I had a very quiet, relaxing day yesterday, and slept pretty well, I feel a whole lot better today than I did on Thursday and Friday past. I am going to try and cultivate a calmer frame of mind, which doesn't come naturally to me! I too feel so lucky to have found this site and am very grateful for all the good advice I have been given, as well as replies like yours that I am not alone with this condition which I realize I am still trying to get my head around! Stay safe and well.

[ClarkB]

I do tend to become anxious, and have had stressful work and ongoing family problems which can’t help. However, these can’t be blamed for the onset of my current illnesses, where I depend on the medication! As you say, I too appreciate all the advice and comments, when even friends are at a loss as to what to say, having never heard of PMR, as I hadn’t!