Progress seems to have stopped / when can I drive again?

[jamesyreid]

Hi there,

 

I stumbled across these forums completely by accident this morning, and already I've found a lot of useful information.  I'm going to provide a brief summary of my experience, which I am hoping others can relate to.  I'm also hoping that some of the posters here can offer me some advice with regards to my recovery, which already is proving extremely frustrating.

 

Ok, here goes.  I am a 46-year-old male who lives in the UK.  I don't smoke, rarely drink alcohol, and am definitely not overweight.  I had always considered myself fit and healthy, and would walk at least a couple of miles every day.

 

On 25th February I got up to get ready for work and felt fine.  It was just like any other day. 

 

10 mins later, I had a "thunderclap" headache which came from nowhere, and felt dizzy and nauseous.  I get a lot of headaches, but this one was completely different to anything I had experienced before.  I knew immediately that something was wrong.

 

I called my GP, who immediately sent me up to hospital.  A CT scan didn't reveal anything untoward, but a lumber puncture indicated that there had been a bleed.  I was then sent for another CT scan, this time with the "contrast" dye, which again didn't show anything, but as a precaution was then transferred to a specialist neurological unit for an angiogram, which didn't reveal an aneurysm.  

 

So I was diagnosed with a non aneurysmal subarachnoid haemorrhage, and after only 4 days in hospital was sent home again, with absolutely no information about recovery or what to expect next (from browsing the posts here, this seems to be a common theme).  There are no follow up appointments, and I haven't to go back to the hospital again.

 

Since being discharged from hospital, I have been suffering from the following:

 

1 - Extreme tiredness.  From reading up about SAH online, I know this is probably the no 1 issue that will affect people who are recovering.

 

2 - Headaches/facial pain.  For a week or two immediately after the haemorrhage, the headaches were very frequent, but could be managed by paracetamol/ibuprofen.  The issue I have now is a "facial pain", which feels very much like sinusitis.  The bridge across my nose is painful, as is the surrounding area (forehead, cheekbones).  I contacted my GP, who said that based on the scans they took in hospital, my sinuses are clear, and three separate medicines I have taken for sinusitis have made no difference.

 

Has anyone else experienced sinusitis-like symptoms during recovery?

 

3 - Lightheartedness/dizziness.  Basically, I don't feel too steady on my feet, although this is fairly mild.

 

4 - For a while, I had back pain, although this has eased off now.  However, ever since the SAH my neck makes a horrible grinding/crunching noise whenever I turn my head.  This definitely didn't happen before the SAH.  I asked the GP about it, and their reply was it is nothing to worry about.  It certainly isn't painful, but the noise is absolutely dreadful.

 

5 - Anxiety.  I'm not sure if this is common after experiencing a major medical issue like SAH, but I am now worried that I am about to have another health emergency that appears without any warning.  For example, I have a very slight pain in my chest bone, and I'm convinced that I am experiencing symptoms of a heart attack.  I'm also worried about how long I am going to be off work for, as given the way I'm currently feeling there is no way I could even think about returning to work just yet.

 

Possibly worst of all is that I'm now concerned my progress has halted, or is even going backwards.  One week ago I could have gone out for a fairly long walk, but this past week the tiredness has meant I've barely been able to make it out of bed.  I know good days and bad days are to be expected, but that's now a bad WEEK I have experienced.

 

So in summary, I guess I'm wondering if the issues I am experiencing are to be expected.  I know everyone is different and will recover at different rates, but I'd always thought of myself as being fit/healthy and a quick healer, and I'm getting more and more frustrated that after around 5 weeks I'm not making as much progress as I would have liked, or even that the progress seems to have stalled.

 

One final thing (bearing in mind I am from the UK).  I was informed upon leaving hospital that I wouldn't be able to drive, and would have to contact the DVLA.  I completed the medical form a few days after being discharged and sent it off to the DVLA, but since then I have heard nothing.

 

Does anyone know when I am likely to hear anything back from the DVLA (I'm assuming they have a post-COVID backlog), and how long I am not going to be able to drive for following my NASAH?  It's not an issue at the moment as I don't feel anywhere near well enough to drive, but I wouldn't mind knowing how long it is going to be for.  Is it likely the DVLA will send me for some sort of medical examination, to ensure I am fit enough to drive again?

 

Thanks!!!

[ClareM]

Hi Jamesyreid

Welcome to BTG, glad you found us and that you are finding the site useful. I know in my early days it was a godsend.

 

I too suffered a NASAH but mine was complicated with Hydrocephalus. You had a very short inpatient stay, was that due to Covid?

 

The post bleed symptoms you describe seem fairly par for the course. However I am unable to comment on the sinus-like pain. It is not something I have heard of before and wonder if you maybe have a sinus infection? Were the medicines you have tried purchased or prescribed by your GP? Maybe a course of antibiotics is required?

 

The light-headedness could be due to fatigue. It's very easy to think you are doing fine and can do that long walk - and yes you can do it at the time. The problem is the way it makes you feel later or the next day or even week. A good week will often be followed by a bad week. As you felt so good you did a lot on the good week - and pay the price later.

It's a very hard lesson to learn, one I still struggle with even 7 years after the event.

 

Anxiety too is a very common issue post a SAH and even more so I think after a NASAH. No one knows what caused it so what's to say it won't happen again? The only solace I can give you is that re-bleeds are very rare. A Brain Surgeon I spoke to told me that A NASAH was probably caused by an aneurysm that blew itself out leaving nothing to show. Did you have any scans or angiograms post the initial bleed?

 

5 weeks is very early in your recovery, I was still sleeping a lot at that stage, like you I considered myself fairly fit prior to my event and it was hard to accept that I just couldn't do much for a while. Take your time and build up gradually, things will get better just maybe not as quickly as you'd like. I'm fitter than I ever was and have got back to running and gym classes but it did take time.

 

Regarding driving I can't offer much advice except to call the DVLA. I had an EVD which resulted in an automatic 6 month revocation of my license. I think your treating doctor may have to confirm with the DVLA that you are fit to drive - but don't quote me!

 

Keep drinking plenty of water and rest, you'll reach you new normal one day - hopefully soon.

 

Clare xx

 

 

 

[JuneZ]

Jamesyreid,

 

 I had NASAH in Nov. 2021 and started to feel facial pain and eye pain in Jan. 2022. It eases off a bit now. I started to feel dizzy and nauseous in Feb. and it gets worse when I change positions or make turns. 

I feel my anxiety is getting worse as I have to return to work or lose my job in a couple weeks. I have to take medicine for my anxiety …

 

It is a longer recovery journey than I expected but I’m getting better than 5 months ago.

 

Best wishes!
 

June

[Alan79]

Hi James, 

 

Sorry to hear about your struggles since your event. 
 

The lack of support / information prior to suffering a SAH seems to be a common theme, I too was sent home with little or no Information.
I was booked in for a follow up MRA scan 3 weeks after my occurrence, that was over 1 month ago now though and I have still not received the results back. I have chased this up several times with the consultants and have been told no news should be good news and someone will be in touch when they have reviewed the images (hardly comforting).

 

Regarding the issues you are having my own experiences are as follows - 

 

1. I did suffer with the extreme tiredness but this passed after 2-3 weeks, now although feeling tired I actually struggle to sleep at nights which is unlike me. 
 

2. Same as yourself for the 1st couple of weeks. Thankfully I’ve been headache free for over a month now. 
I did have sinusitis for the 1st time in the 2 weeks leading up to my event but wouldn’t think there is a link there in my case. 
 

3. Same again but fairly mild and passed after 2 weeks. 
 

4 & 5. Not something that I can say has affected me, sorry it’s not that for yourself and it can’t be nice to deal with. 
 

Regarding driving, I too completed the DVLA forms and didn’t hear anything back for 4-5 weeks so I called them direct. They informed me that they have a large back log due to covid, the lady I spoke to was very helpful though and after a few questions and then checking with her manager she said that as long as my GP was okay with me driving then I was okay to resume. The concern for them seemed to be whether I had any procedure carried out I.e clipping or coiling ( this is then a standard 9-12 month suspension of licence).

I literally done nothing but rest and hydrate for 4-5 weeks then built up with little walks with my dogs. I’ve now been back at work for a few weeks on phased return with reduced hours, I still get some tired spells in afternoons but I’m starting to feel the most normal I’ve felt since it happened. 
In terms of your recovery just try to be patient and don’t put too much pressure on yourself, everyone is different but you will get there.

[jamesyreid]

Thanks for the replies so far.

 

Clare - I should have said that I was given three medications on prescription by a doctor for the sinusitis symptoms I was experiencing, two of which were antibiotics. However, this was before another doctor viewed my scans from the hospital and said my sinuses were clear, and the sensations I was experiencing were more likely related to my SAH than sinusitis.

 

I've tried calling the DVLA several times, but it seems to be impossible to speak to anyone. They simply end the call by saying "nobody is available to take your call" rather than placing you in a queue. Very frustrating.

 

The form I sent to the DVLA contains the contact details of my doctor and my consultant at the hospital, so presumably the DVLA will contact them, and they will advise when it is safe for me to drive again. I'm guessing that due to COVID they will have a backlog of cases to process, but it would be nice to have a ballpark date of when I might be allowed to drive again. I'm guessing 6 months sounds about right.

 

Finally, I don't think my short hospital stay had anything to to with COVID. As soon as my DSA confirmed there was no aneurysm, I was sent on my way.

 

Thanks

[Louise]

Hi there

 

warm welcome to the site, glad that you found us...

 

You are still early days in your recovery Yes Feb I know but its early days never the less, keep yourself well hydrated (helps with the dizzy/fatigue/headaches)  

21 hours ago, jamesyreid said:

fairly long walk

Do short walks for a while, the longer you walk you have to do the same in reverse to get home always bare that in mind...

 

DVLA seem to take an eterty to work though it, I dont drive just what I hear/read about on here.

 

And of course we have the 'pandemic' as they'll say, but do give them so long and find out...

 

Its all trial and error finding out what right for you.

 

wishing you well.

[jamesyreid]

Thanks Alan. Some great information there.

I might have another go at getting through to the DVLA once I (hopefully) start to feel a bit better.

Can I ask if you contacted your GP and asked them to issue you with a letter, stating it is safe for you to drive again?

[Super Mario]

4 hours ago, JuneZ said:

I feel my anxiety is getting worse as I have to return to work or lose my job in a couple weeks. I have to take medicine for my anxiety

May I suggest that when you return to work you don't go full on. Ask for a phased return gradually building up the hours you do over a good few weeks.

[Alan79]

32 minutes ago, jamesyreid said:

Thanks Alan. Some great information there.

I might have another go at getting through to the DVLA once I (hopefully) start to feel a bit better.

Can I ask if you contacted your GP and asked them to issue you with a letter, stating it is safe for you to drive again?

James, 

 

Keep trying them, it took me trying a few times a day for probably a week to get through. 
 

Yes I spoke to my GP who confirmed she was happy for me to resume driving and issued me with a fit to drive letter, again though as with everything SAH related I just started off with small journeys until I felt more comfortable.

[Rory]

Hello James, I had bad sinus headaches in the week leading up to my NASAH event, so bad that I was on antibiotics as I was diagnosed with a sinus infection (via Zoom--it was Covid time--who knows if I actually had one). Like you, in the forehead and facial areas. I've had sinus headaches on and off for years prior to the NASAH, mostly as a result of allergies. And I continued to get them after the NASAH.

 

So....late last year I was tested for allergies, and was found that I'm off-the-charts allergic to my cat, as well as some trees and grasses. So now I'm getting allergy shots every week to build immunity to these things. I started them in January, and am already noticing an improvement. My unexpert theory on this is that the sinus pressure weakened something, which caused a blood vessel to rupture, which leads me to believe that the root cause of all of this is my allergies.

[elmlou]

Hi Jamesyreid,

 

I came across this site after googling the DVLA and NASAH. I am a 41 year old female and at the end of August 2021 had an NASAH. Like you, I considered myself fit and well and it came as such a shock. Thankfully I am now fully recovered with no lasting effects.

 

I just wanted to give my thoughts to you on the DVLA situation. I submitted the forms mid-September 2021. Since then I have contacted the DVLA twice for an update. Last time I spoke to someone there (after many, many attempts at trying) was at the start of this month (May 2022). The person I spoke to said that they hadn't begin processing my forms yet! So about 8 months after sending them, there has been zero progress. I am fully expecting the process to take another few months at this rate.

 

As I understand it, the forms get passed to their medical team of professionals who then contact your GP or hospital consultant, before making a decision.

 

The person I spoke to at the DVLA confirmed that as long my GP was ok with it, I could resume driving whilst they deal with my paperwork. My GP gave me the go ahead and I've been lucky enough to continue using my car since. Just wish that the DVLA would get a move on now!

 

I hope this helps, and continued good luck with your recovery.

[jamesyreid]

19 hours ago, elmlou said:

Hi Jamesyreid,

 

I came across this site after googling the DVLA and NASAH. I am a 41 year old female and at the end of August 2021 had an NASAH. Like you, I considered myself fit and well and it came as such a shock. Thankfully I am now fully recovered with no lasting effects.

 

I just wanted to give my thoughts to you on the DVLA situation. I submitted the forms mid-September 2021. Since then I have contacted the DVLA twice for an update. Last time I spoke to someone there (after many, many attempts at trying) was at the start of this month (May 2022). The person I spoke to said that they hadn't begin processing my forms yet! So about 8 months after sending them, there has been zero progress. I am fully expecting the process to take another few months at this rate.

 

As I understand it, the forms get passed to their medical team of professionals who then contact your GP or hospital consultant, before making a decision.

 

The person I spoke to at the DVLA confirmed that as long my GP was ok with it, I could resume driving whilst they deal with my paperwork. My GP gave me the go ahead and I've been lucky enough to continue using my car since. Just wish that the DVLA would get a move on now!

 

I hope this helps, and continued good luck with your recovery.

 

Thanks for that update.  I'm glad to hear you have now fully recovered.

 

It's now been just over three months since my NASAH and I'm still not 100% better.  I still get tired, and my head has this horrible heavy/cloudy/fuzzy feeling which is difficult to describe exactly.  I have however started back work on a phased basis, doing only light duties for now.

 

Like yourself, after hearing nothing from the DVLA I tried calling them for an update, and when I finally got through (after many attempts) I was told there had been zero progress with my case.  However, the person I spoke to said he would see what he could do about it, and maybe a week later I received a letter from the DVLA saying they had contacted my consultant at the hospital, and they would let me know when they heard back from him.  So at least my case is under way, however like you say it is likely to take several more months before I hear anything further.

 

The guy I spoke to at the DVLA also confirmed what you said about them being happy enough for me to resume driving once my GP gives the go ahead.  Unfortunately I don't feel quite well enough for that just yet, but hopefully soon.

 

Can I just check - was it a verbal "go ahead" you were given from your GP to resume driving, or were you given something in writing which you had to them forward to the DVLA?

 

Thanks,

 

James

PS One more question.  Can you remember roughly how long it took before you felt you were back to normal following your NASAH?

[elmlou]

Hello again.

 

I think it’s completely down to the individual how long the recovery takes. For me the first two weeks after it happened were horrendous, then gradually week by week I saw improvements. I would say it took me a couple of months but I do think that’s probably fairly quick judging by what I’ve read. You’ll get there. Your body has been through a hugely traumatic experience so be kind to yourself.

 

So, spurred on by your recent DVLA call I called them again this afternoon! Top tip: when the recorded message asks you to choose 1, 2 or 3, don’t press anything. The message will repeat two more times, just ignore it, and then a new message says ‘we will now connect you to an adviser’. Seems to work well for getting through to someone fairly quickly. 

The person I spoke to said that still no progressive had been made on my case… He then offered to expedite it so hopefully I will get a letter like you in the coming days or weeks.

 

Re my GP, I didn’t need to pass on any documentation to the DVLA confirming that the doctor was ok with me driving. The GP just added it to my medical records and that was that. The man from the DVLA confirmed again today that as long as the GP says it’s ok, then it’s completely fine to drive.

 

I take it you’ve seen the document that GPs refer to when deciding if a patient is able to drive? Here’s the link:

 

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/965900/MIS828_interactive_020321_Final.pdf

 

Hope this helps. 

[jamesyreid]

On 31/05/2022 at 21:27, elmlou said:

I take it you’ve seen the document that GPs refer to when deciding if a patient is able to drive? Here’s the link:

 

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/965900/MIS828_interactive_020321_Final.pdf

 

Hope this helps. 

 

Hi Elmlou, and sorry to bother you again, however I've just been reading from your link about what the DVLA say about assessing fitness to drive following a NASAH.

 

I've taken the following from that document:

 

Quote

Subarachnoid haemorrhage

 

Group 1 - car and motorcycle

 

Non-aneurysmal subarachnoid haemorrhage
This includes conditions that have different consequences for licensing including perimesencephalic SAH: convexity SAH/cortical superficial siderosis causing transient focal neurological events often attributed to CAA, and sometimes known as ‘amyloid spells’ and reversible cerebral vasoconstriction syndrome.

 

Must not drive and must notify DVLA.

 

Driving may resume on clinical confirmation of recovery and, if no other cause has been identified, documented normal cerebrovascular imaging.

 

Does this mean that I need to go for a follow up scan before my GP can declare me fit to drive?

 

You didn't mention this in your last post, so I'm assuming you weren't required to do this.

 

I was wondering if perhaps this was a recent addition to the document, as I can see it says "May 2022" on the front page.

 

This really would be just my luck if the DVLA legislation around NASAH has changed very recently 😭

[elmlou]

Hi! So I actually signed up to DVLA email alerts (sad person that I am!) and got an email about the changes to this document last week. It listed the main changes (which you’ll also see listed on page 2 of the pdf) and only one change appears to have been made to Neurological Disorders (cranioplasty), which isn’t relevant to us.

 

In summary, the wording you’ve quoted for subarachnoid haemorrhage hasn’t changed since I first read it last year.

 

As my imaging that was done in hospital when I was admitted for my NASAH was shown to be normal, and is documented on my records as such, I don’t require follow up imaging. I would imagine you would be the same?

 

As an aside, I managed to get hold of the clinical nurse specialist in the hospital neurology dept last week, just to see if they had received a letter from the DVLA yet and surprise surprise, they hadn’t…although the DVLA sent me out a letter (probably like the one you were sent) to say they’d written to my consultant.

 

The clinical nurse specialist confirmed as long as I am recovered and the GP oks it I can drive. She said I was lucky to have been given the ok as she comes across GPs who don’t always understand the wording in the DVLA document as it can be a bit ambiguous, and they end up erring on the side of caution. First time I read it I thought I’d be stuck not driving forever but when you break down the details it becomes clearer!

 

I hope this gives you some reassurance.

 

E

 

 

 

 

[elmlou]

P.S. I took a screenshot of the wording in September last year and still have it in my photos on my phone. Here it is.

[jamesyreid]

Just in case anyone is interested, here is a little update on my experiences with dealing with the DVLA.

 

As mentioned previously, I tried contacting them a few times, only to find they hadn't even started progressing my case yet. It was only when I told them I really needed to drive for my work, and that my GP was reluctant to declare me fit to drive, that they got my case underway and contacted my consultant at the hospital. I was told that my case would be treated as high priority.

 

I received a letter from the DVLA dated May 25th, which said they had contacted my consultant at the hospital where I was treated, and were waiting for a response. For context, I suffered my NASAH on Feb 25 and submitted my medical form to DVLA in early March, not long after being released from hospital.

 

I chased the DVLA again on Friday of last week (July 1st), and was told that only the previous day had they received the requested information from my consultant at the hospital. They said they would need to process his response, and I would be informed of the decision in due course.

 

Then just this morning, I received a letter from the DVLA informing me that I "satisfy the medical standards for safe driving" 😊

 

So in summary, from my experience the moral of the story is that unless you get the DVLA to treat your case as high priority, it will take a LONG time before you hear anything back. I am fairly sure that unless I had done this, my case would not have been progressed at all, and would still be languishing in their huge backlog.

 

 

 

 

[Tina]

James congratulations  Happy driving  so pleased for you.

 

Thank you so much for sharing and updating us with your experience.

[elmlou]

Hi Jamesy,

 

That's great news!

 

I too received a letter from them today with what sounds like the same wording as you - 'you satisfy the medical standards for safe driving'.

 

Hallelujah! It's taken 10 months to reach this point.

 

The weird thing is they didn't contact my consultant or GP in the end, so they must've made a decision based on my hospital discharge notes I provided at the outset.

 

Either way, it doesn't matter, it's just good to get the matter concluded finally.

 

I hope you're continuing to recover ok and are enjoying the summer.

 

All the best.