Headaches when walking

[AdamS]

Hi All,

Ever since I came down with ME/POTS i've had really strange headaches that usually happen in the following scenarios:

• When walking quite fast for over 1 mile.
• Sometimes when walking up hills/gradients.
• Walking when the weather is bad seems to make it worse but I could be wrong.

Below are the symptoms:

• Feels like my head is in a vice and my brain is being crushed.
• Feels like there is pressure in my head.
• Feels like some invisible force is pulling my head to one side sometimes.
• Pain and stiffness up the back of my neck like two metal rods are in there.

Has anyone else experienced anything like this? Is it more of a POTS or ME thing?

Thanks, Adam

 

[charles shepherd]

Hi Adam

What you are describing here could be related to ME/CFS but it is not a typical symptom of ME/CFS

It's possible that you have an ME/CFS modified form of what is termed an exercise headache - more info here:
http://www.webmd.com/migraines-headaches/guide/triggers-exercise

or possibly even exercise-induced migraine (which seems to be more common in ME/CFS):
https://www.migrainetrust.org/living-with-migraine/coping-managing/exercise/

In the case of exercise induced migraine headache, eating at least an hour and a half before exercising, and leaving time for your body to digest the food – will help to avoid a low blood sugar level which can trigger a migraine. In the case of exercise induced migraine, people can also take glucose sweets to maintain blood glucose levels prior to exercising.

But you really need to consult your doctor to make sure that there isn't something more serious (eg high blood pressure) causing this symptom, and whether you need to have some tests or further assessment, before self treating or following other people's well meaning advice on either diagnosis or management

We have an MEA information leaflet that covers all aspects of headaches in relation to ME/CFS

This includes the overlap with migraine type headaches in ME/CFS, and their management

http://www.meassociation.org.uk/shop/management-leaflets/headaches/

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[AdamS]

Hi @charles shepherd

Thanks for the advice. My blood pressure is on the low/normal side so I can probably rule that one out. I do have POTS which was confirmed in two seperate tilt table tests, i'm also currently awaiting results back from a Cranial MRI, I guess that will be normal though. My Neurologist wanted to trial me on Pizotifen for Migraine but it was kind of a 'shot in the dark' as he put it. It's interesting though that these headaches i've been having aren't actually a typical ME/CFS symptom, that kind of gives me some hope.

 

[Valentijn]

@AdamS - Can you check your heart rate and/or blood pressure when it's happening?

 

[AdamS]

@AdamS - Can you check your heart rate and/or blood pressure when it's happening?

I don't have a blood pressure monitor but I do have a Fitbit, my heart rate at the time was around 112-118bpm on the walk when the symptoms occurred. I've noticed that sometimes when I do the exact same walk with similar HR, I don't get the headaches though so i'm not sure if HR is the problem.

Blood pressure would be a good thing to measure for sure, my other thoughts were that it could be the pace at which i'm walking (faster pace usually brings on the headaches) or something else like weather/barometric pressure. These things never affected me when I was healthy though so it seems strange. If my MRI is fine, perhaps it is something to do with my neck/blood flow, i'm really not sure.

 

[AdamS]

Just had a thought...Is it possible that my headaches are just a type of PEM?

 

[charles shepherd]

Hi @charles shepherd

Thanks for the advice. My blood pressure is on the low/normal side so I can probably rule that one out. I do have POTS which was confirmed in two seperate tilt table tests, i'm also currently awaiting results back from a Cranial MRI, I guess that will be normal though. My Neurologist wanted to trial me on Pizotifen for Migraine but it was kind of a 'shot in the dark' as he put it. It's interesting though that these headaches i've been having aren't actually a typical ME/CFS symptom, that kind of gives me some hope.

OK - it sounds as though you are being thoroughly investigated to exclude serious causes of headaches

And it seems that your doc was thinking along similar lines re a link to exercise induced migraine - so this 'shot in the dark' approach is worth considering

Staying on the subject of migraine headaches and the importance of having some food in the system and being properly hydrated before exercise - do these headaches bear any relationship to when you last ate?

CS

 

[AdamS]

And it seems that your doc was thinking along similar lines re a link to exercise induced migraine - so this 'shot in the dark' approach is worth considering

Staying on the subject of migraine headaches and the importance of having some food in the system and being properly hydrated before exercise - do these headaches bear any relationship to when you last ate?

CS

The walk which triggered the headache today was about 1 hour after lunch, I also made sure I drank a large glass of water before I started walking. I'm a bit concerned now because the headache has lingered all day and seems to flare up every time I walk around. My guess is that it will settle down after a nights sleep but still it's a little concerning and does restrict me quite a lot. I did have quite a bad jolt to my neck on an offroad driving day about 3 weeks before my acute onset of POTS/ME, I wonder if this could be linked?

I don't know which out of these my problem would fall under:

Primary exercise headaches

The exact cause of primary exercise headaches is unknown. One theory is that strenuous exercise dilates blood vessels inside the skull.

Secondary exercise headaches

Secondary exercise headaches are caused by an underlying problem, such as:

• Bleeding in the area between the brain and the thin membranes that cover the brain (subarachnoid hemorrhage)
• Abnormalities in a blood vessel leading to or within the brain
• Cancerous or noncancerous tumors
• Obstruction of cerebrospinal fluid flow
• Sinus infection
• Structural abnormalities in the head, neck or spine

 

[halcyon]

What you are describing here could be related to ME/CFS but it is not a typical symptom of ME/CFS

I assume you mean something specific about what he is describing rather than headaches in general. In Ramsay and Dowsett's study of 420 patients, headache was one of the most common symptoms, showing up in 75% of patients.

Just had a thought...Is it possible that my headaches are just a type of PEM?

How much time elapses between the exertion and the headache? For me, headache is often my very first sign of PEM, showing up within a few hours of exertion.

 

[Kati]

Just had a thought...Is it possible that my headaches are just a type of PEM?

Headaches while or after exercising are likely a sign that you have done (or are doing) too much. Try reducing your distance and quite possibly your pace as well amd see how it goes.

For me I know i cannot walk 1 block and I have to walk very slowly, otherwise I do get symptoms during and afterwards.

 

[rosie26]

...Is it possible that my headaches are just a type of PEM?

It was one of the first symptoms that I had done too much. It would come on very quickly in my severe years. I can do more now without getting this immediate type of headache.

This last month I have now had two episodes of headache where I have woken in the morning with headache, sore neck which proceeded to nausea and vomiting within hours. Yesterday morning I experienced the second episode but made sure to treat it quickly this time with paracetamol and then diclofenac (voltaren) a hour later.

 

[rosie26]

This last month I have now had two episodes of headache where I have woken in the morning with headache, sore neck which proceeded to nausea and vomiting within hours. Yesterday morning I experienced the second episode but made sure to treat it quickly this time with paracetamol and then diclofenac (voltaren) a hour later.

I think this particular headache I am now getting might be due to dehydration during the night, both nights I slept longer without my usual sips of water throughout the night. The sinuses could be contributing as well.

 

[Molly98]

I also get headaches but from more than a couple of minutes standing or being upright.
I also have POTs and I also have migraines. The headaches which I get from standing /walking tend to differ in characteristic from the migraine type headache and the headache I get with PEM. I refer to them as blood pressure headaches as I am pretty convinced it has something to do with blood pressure or vascular. When I spoke to my POTs specialist about and said I had come to describe them as blood pressure headaches he said that this is likely right that they are to do with blood pressure but that they would be more likely low blood pressure headaches.

Through trial and error, I have figured out that I can be upright / walking for 2 minutes, anything over this is headache inducing and it will likely stay with me for the rest of the day. Also neck pain. The longer I try and remain upright the worse it becomes.

I get other POTs symptoms, dizziness, breathlessness, yawning, disorientation within those 2 minutes but they pass once I lie down, it is the headaches that will stay with me for hours or even the whole day.

When measured by my specialist my oxygen levels dropped considerably in the first few minutes of standing, I also wonder if this may contribute to the headaches.

I have found that if I stay within that 2-minute upright window, my day is far better, otherwise I have a constant headache all day every day.

Perhaps experimenting a bit as to how long you can be upright/ walking without provoking a headache may be worth trying.

 

[charles shepherd]

From the MEA information leaflet on headaches and ME/CFS:

What causes headaches in ME/CFS?


The simple answer is that we just don’t know. Although various abnormalities relating to brain and nervous system function have been reported in the research literature, none of them provide a satisfactory explanation as to why some people with ME/CFS have headaches, and others do not.


What we do know from research is that there is a link between ME/CFS and migraine-type headaches (reference 1). And where migraines or migraine-type headaches occur, this will influence the choice of drugs that might be used to both treat and prevent headaches occurring.


There is also a link between ME/CFS and temperomandibular joint (TMJ) disorders (reference 2) – where the joint between the lower jaw and base of the skull causes various types of facial pain. About 20% of people with TMJ disorders have headaches. If you suspect that you may have a TMJ problem, the best person to talk to is your dentist.


There has also been some research published from a neurology group at Addenbrooke’s Hospital in Cambridge (reference 3) which indicates that an unknown, but possibly substantial minority of patients with ME/CFS have what is called idiopathic intracranial hypertension.


When to see your doctor


If you have headaches at the start of your ME/CFS, this should always form part of the initial clinical assessment in the consulting room. The doctor should ask about the location of the pain, severity, duration, exacerbating factors (e.g coughing, sneezing, exercising, change in posture, menstruation) and relieving factors – all of which will help to decide whether there is any need to investigate further and what sort of drug treatment is most likely to help.


If there are any other symptoms or signs suggesting that there could be another more serious explanation for your headaches the doctor will arrange further tests, or refer you to a neurologist, or to a headache clinic at the hospital.


If headaches appear after ME/CFS has been diagnosed as a ‘new symptom’, this should always be discussed with your GP before you start self-treating with over-the-counter (OTC) painkilling drugs.


Red flag symptoms and signs


There are a number of ‘red flag’ symptoms and signs which indicate that a headache may have a more serious cause. If any of these symptoms occur you must see your doctor for further advice:


· Sudden severe headache

· Red eye and haloes around lights – acute glaucoma

· Neurological symptoms or signs

· Co-inciding with other new symptoms or signs


Headaches in children


Headaches can also occur in children and adolescents with ME/CFS. Again, it’s important to check with your doctor who will want to ask about:


· Where they occur

· How often they occur

· What makes them better (e.g sleep) or worse (e.g food, periods, stress)

· Are there any associated symptoms?

· Are headaches reported at school?


If a child has a more severe or sudden headache, or persisting headaches, other explanations must be considered. Red light symptoms, where you must check with a doctor, include:


· Photophobia – sensitive to bright lights

· Neck stiffness

· Fever

· Non blanching skin rash

· Weakness of arm or leg

· Changes in conscious level or behavior


Any headache that is accompanied by photophobia, neck stiffness or a rash could be due to meningitis – which is a medical emergency.

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[AdamS]

How much time elapses between the exertion and the headache? For me, headache is often my very first sign of PEM, showing up within a few hours of exertion.

Hi halcyon,

The headaches actually come on during walks, usually if i'm walking a bit too quick or if i'm walking up a slight gradient. Sometimes if I slow down a bit or actually stop for a few seconds the headache will go and I can carry on walking, I think yesterday I didn't listen to the warning signs enough. I'd love to know what it actually is though, like if it's a PEM warning sign, a vascular issue or something else. My neck does stiffen when it happens, it's an awful feeling, my head is still hurting a bit today even and I don't feel too good.

 

[AdamS]

There has also been some research published from a neurology group at Addenbrooke’s Hospital in Cambridge (reference 3) which indicates that an unknown, but possibly substantial minority of patients with ME/CFS have what is called idiopathic intracranial hypertension.

Cool, i'll ask my neurologist about this.

 

[charles shepherd]

Paper from Higgins et al in Cambridge on headaches and idiopathic intracranial hypertension in ME/CFS:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/

Abstract
Chronic fatigue syndrome and cases of idiopathic intracranial hypertension without signs of raised intracranial pressure can be impossible to distinguish without direct measurement of intracranial pressure.

Moreover, lumbar puncture, the usual method of measuring intracranial pressure, can produce a similar respite from symptoms in patients with chronic fatigue as it does in idiopathic intracranial hypertension.

This suggests a connection between them, with chronic fatigue syndrome representing a forme fruste variant of idiopathic intracranial hypertension.

If this were the case, then treatments available for idiopathic intracranial hypertension might be appropriate for chronic fatigue.

We describe a 49-year-old woman with a long and debilitating history of chronic fatigue syndrome who was targeted for investigation of intracranial pressure because of headache, then diagnosed with borderline idiopathic intracranial hypertension after lumbar puncture and cerebrospinal fluid drainage.

Further investigation showed narrowings at the anterior ends of the transverse sinuses, typical of those seen in idiopathic intracranial hypertension and associated with pressure gradients.

Stenting of both transverse sinuses brought about a life-changing remission of symptoms with no regression in 2 years of follow-up.

This result invites study of an alternative approach to the investigation and management of chronic fatigue.

 

[.Chris.]

Interesting thread. I experience exertion-related headaches similar to the ones you describe, in addition to constant headaches that have a mixture of migraine and tension-type symptoms. They tend to be worse first thing in the morning, and are made worse by disturbed sleep, prolonged concentration, loud high-pitched noises, very bright lights and cold weather. They are always centred on the same place, and when really bad I also have a strange sensation almost like water running down the inside of my head (?!?).

These headaches are, for me, now one of the worst symptoms of this illness, almost on a par with the fatigue, etc. Fortunately, as my ME has generally improved, the headaches have also become less severe but are still troublesome. The only thing I've found helpful so far is propranolol - this reduces the severity of my headaches by 50% or more so it might be worth discussing with your neurologist. I don't have POTS though, so I'm not sure whether you'd be able to take it.

Also interesting is the paper that Charles mentions - I actually went to see Dr Higgins and Prof Lever after reading about their previous research online. I had a cerebral venogram which I was told was unremarkable other than a very slightly narrowed vein. Interestingly this was located right near the 'epicentre' of my headaches. I had a lumbar puncture to see if there was any improvement in my headache following withdrawl of the fluid. From memory my CSF pressure was 18. Unfortunately I only had a very slight transient improvement in the headache. They did offer to put something temporarily into the narrowed vein to see if that improved things but in view of the potential risks I decided to try alternatives first... none of which have worked so far!

I hope you find something that works for you in the end .

 

[AdamS]

The only thing I've found helpful so far is propranolol - this reduces the severity of my headaches by 50% or more so it might be worth discussing with your neurologist. I don't have POTS though, so I'm not sure whether you'd be able to take it.

Thanks for the reply. From what I understand, Propranolol is prescribed for POTS sometimes and is used in combination with Midodrine (which I currently take), so I might enquire about it.

 

[rosie26]

Hi halcyon,

The headaches actually come on during walks, usually if i'm walking a bit too quick or if i'm walking up a slight gradient. Sometimes if I slow down a bit or actually stop for a few seconds the headache will go and I can carry on walking, I think yesterday I didn't listen to the warning signs enough. I'd love to know what it actually is though, like if it's a PEM warning sign, a vascular issue or something else. My neck does stiffen when it happens, it's an awful feeling, my head is still hurting a bit today even and I don't feel too good.

Do you notice exhaustion and heavy breathing as if you had just run a marathon? In my severe years I would get those symptoms with the headache and have an urgent need to lie down. I had a terrible headache every day for the first year of severe onset and then nearly everyday for the next two years.

It felt vascular, to me but I don't know if it is. I also get heat with the headache. It never took much exertion to set the headaches off or make worse. So relieved I am better in that way at this stage of my ME but now I have other problems - new ones to figure out, and having to question what is part of ME and what is 'getting older' or is it a mix of ME progressing other illnesses in me --

I am now wondering whether these new headaches I am getting when I wake up... are intracranial hypertension. I have been feeling some weird internal pressure for the last year. Affects my eyes sometimes, my eyes feel strained. I was offered a spinal tap a few weeks ago at the A&E... I should have said yes. I was just so shocked at being asked and having to make an on the spot decision. The lady doctor seemed like a great doctor, confident and was a reassuring type personality. But I needed more time and didn't know the risks. I was so disappointed at my decision and not being able to say yes to a spinal tap.

@charles shepherd If I should ever have a spinal tap in the future what could I ask to be tested in the spinal fluid in regards to ME, besides checking for intracranial hypertension and meningitis? It would seem such a waste to have a spinal tap and not find out more information at the same time.